Spectrum Life Magazine Spring 2025 issue from Autism Empowerment
AUTISM SERVES - HELPING HANDS
L ightly-weighted for an extra sense of security and stability, the TwiddleNathan helps youngsters find that “just-right zone” for maintaining attention and appropriate behavior for tasks and activities. Crafted from cozy, durable fabrics and plush fleece, the Nathan features high-grade fidgets attached with ribbon loops that snap, to enable switching around and personalizing fidgets for variety’s sake, training purposes, or the child’s own preferences.
Ideal for home, therapy clinics, and ”safe spaces” at school and other group settings.
TWIDDLE®NATHAN
AUTISM SERVES - HELPING HANDS: SUMI DYMENT
FEATURED SECTIONS
From the Publisher
In this season of change, Spectrum Life brings hope.
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ADVOCACY
Autism Serves - Helping Hands
An interview with teen leader Sumi Dyment.
Autism Diagnosis is Broken
Asking Autistics: Improving the Autism Diagnostic Assessment.
LIFESPAN
A Day in the Life of Rory Bristol Mental Health Educator, Advocate, and Creator.
Autistic & ADHD: A Different Sense of Age
Why do Autistic and ADHD individuals often feel younger than they are?
RECREATION
Lights, Camera, Autistic Inclusion!
EDUCATION
Inside PSU’s Autism and Social Communication Lab Participatory Research: Centering Autistic Voices.
Empowering Autistic Students With AI Storytelling Building Skills, Confidence, and Communication.
HEALTH + WELLNESS
Ask Spectrum Life: Resources for Older Adults
A new Autism, Disability, and Aging series announced.
Connections for our Community Standing together. We see you. An advocacy message from Autism Empowerment. 4 40 23 5
AE’s Neurodivergent Creators Collective Autism Empowerment introduces a new era of inclusive storytelling.
Breaking Barriers to I/DD Health Care
The OODH Linkage Project helps make connections.
THERAPY
Autism and Grief: Processing Loss Differently Navigating loss in teens and adults.
Welcome to the Spring 2025 edition of Spectrum Life Magazine!
We are so grateful to be back! You may have noticed that we did not publish a Winter 2025 issue. After a year of profound personal loss— including the passing of my husband John’s father in March 2024 and my mother in November 2024—we needed to pause. Grief reshapes us, and we appreciate your patience and encouragement as we return with renewed purpose.
At Autism Empowerment, we believe in meeting people where they are, and that includes acknowledging the complexities of life— including grief, resilience, and the strength to continue. This issue reflects that spirit, highlighting stories of empowerment, advocacy, and Connections for our Community (page 5).
In our cover story, Autism Serves – Helping Hands (page 7), we meet teen leader Sumi Dyment, whose volunteerism is making a real impact. We then ask Autistics about the need to improve the autism diagnostic process in Autism Diagnosis is Broken (page 10).
Life’s journey is unique for everyone. Autistic & ADHD: A Different Sense of Age (page 20) explores why many feel out of sync with their chronological age, while A Day in the Life of Rory Bristol (page 15) shares the experience of an advocate and mental health educator.
Creativity and inclusion take center stage in Lights, Camera, Autistic Inclusion! (page 23), featuring the neurodivergent cast of Hold My Beer, and in AE’s Neurodivergent Creators Collective (page 28), where Autism Empowerment launches a new storytelling for good initiative.
Education and innovation remain vital, with Inside PSU’s Autism and Social Communication Lab (page 35) centering autistic voices in research and Empowering Autistic Students With AI Storytelling (page 40) exploring AI’s role in communication.
Ask Spectrum Life (page 44) debuts a new series focusing on autism, disability, and aging, while Breaking Barriers to I/DD Health Care (page 46) discusses the OODH Linkage Project’s efforts to improve health care access. Finally, we address an often-overlooked topic in Autism and Grief: Processing Loss Differently (page 52), offering guidance for those navigating loss.
Though the past year brought challenges, it reaffirmed our commitment to uplifting and empowering our community. Thank you for being part of this journey.
With gratitude and hope,
Karen Krejcha
Executive Director & Co-Founder: Autism Empowerment™
Editor: Spectrum Life Magazine™
SPRING 2025 | VOLUME 14, ISSUE 1
SPECTRUM LIFE MAGAZINE TM
A program of Autism Empowerment TM
Karen Krejcha, Autism Empowerment, Publisher
Dave Born, Graphic Designer
Editorial Advisory Board:
Aaron Blackwelder
Amy Donaldson, Ph.D., CCC-SLP
Laurie Drapela, Ph.D
Tanya English
John Krejcha
Anson Service, PsyD, LMHC
Brian Tashima
Mailing address: Autism Empowerment P. O. Box 871676 Vancouver, WA 98687 (360) 852-8369
Autism Empowerment is a 501(c)3 nonprofit devoted to promoting a culture of acceptance and empowerment for children, teens, adults and families within Autism and Neurodivergent communities.
Teen leader Sumi Dyment and her pug Gary celebrate the launch of Autism ServesHelping Hands (page 7)
www.
Photo
Connections for our Community
Standing together. We see you. An advocacy message from Autism Empowerment.
The first few months of 2025 have seen a surge of discussions about Diversity, Equity, Inclusion, and Accessibility (DEIA), often framed negatively in political discourse.
At Autism Empowerment, our mission has always been to promote acceptance, enrichment, inspiration, and empowerment for autistic and neurodivergent youth, adults, and families—regardless of shifting political landscapes or who holds positions of power.
As a neurodivergent-led organization founded in June 2011, we believe that every individual has unique gifts and strengths to share. We are dedicated to fostering a world where all people are valued, respected, and given the opportunity to thrive. This commitment remains at the core of who we are.
In light of recent developments, we acknowledge the growing concerns within our community regarding changes in disability, education, and health-related policies in the United States. Autism Empowerment stands firmly with autistic and neurodivergent individuals, including those with Intellectual and Developmental Disabilities (I/DD) and their families. We affirm that our community members are not burdens but valuable contributors to society, and their well-being matters deeply.
We will continue to advocate for inclusion and accessibility for ALL autistic and neurodivergent people, including those with I/DD, as well as individuals from BIPOC, LGBTQ+, and immigrant communities—regardless of documentation status—who need advocacy, resources, and support.
We recognize that many people belong to multiple intersecting communities, and we honor and respect the full diversity of lived experiences within our broader neurodivergent and disability community. We believe that standing together makes a meaningful difference in creating a more inclusive world. You are our allies. You are our neighbors.
We recognize that health and societal challenges are real, and true progress comes from compassionate support, equitable access to resources, and opportunities for all individuals to reach their full potential. Any initiative
addressing health outcomes must be grounded in inclusion, respect, and dignity—which means authentically including autistic, I/DD, and neurodivergent voices in all aspects of evaluation, decision-making, and funding.
Autism is a spectrum, and every autistic person is worthy of having their needs met. Autism Empowerment remains unwavering in its commitment to advocating for the rights, health, and well-being of all autistic, neurodivergent, and I/DD people and their families. Through our programs, including Spectrum Life Magazine, we will continue to provide resources, support, and a platform for diverse voices within our community to be heard.
We acknowledge that, like many nonprofit organizations, we are facing rising costs and decreasing funding opportunities, making it a challenging time to sustain and grow Spectrum Life Magazine and our programs. However, our dedication to keeping this magazine and our advocacy efforts going remains steadfast. We are committed to finding innovative ways to continue serving our community and ensuring that resources remain accessible to those who need them most.
We encourage our community to stay informed, support one another, and join us in promoting acceptance and understanding.
Together, we will continue striving for a future where all people, regardless of ability, are celebrated for who they are and supported in living their best lives.
With Hope, Love, Grace, and Empowerment,
courtesy
Photo
of John Krejcha
Autism Serves - Helping Hands
An interview with teen leader Sumi Dyment.
By Karen Krejcha
For many individuals and families in autism and neurodivergent communities, volunteering can be a meaningful way to connect, give back, and build lasting friendships. One young leader, 15-year-old Sumi Dyment, is making this opportunity more accessible through the launch of Autism Serves - Helping Hands, a neurodivergent-led volunteerism program designed especially for neurodivergent teens and young adults.
As the founder of this exciting initiative, Sumi is bringing fresh energy and a personal passion for inclusion and service.
Spectrum Life Magazine recently connected with Sumi to learn about her journey, the inspiration behind Helping Hands, and how this fun volunteering program is preparing to make a lasting positive impact.
Hi Sumi! Thank you for introducing our readers to this exciting new volunteerism program! Can you start by telling us a little about yourself and your family?
Well, to start off, I’m 15 years old and a sophomore at Rooted School Vancouver. I have an amazing family at home, and I love them very much. My mom (Brandi) loves to have a schedule and have everything planned out. She has helped me to start this program and has been a huge support for me.
My dad (Eddie) is always keeping busy and making people laugh—he’s the biggest goofball I know, but he does make me laugh. (Don’t tell him I said that!)
My sister (Kimi) is one of the bravest people I know. She’s always the one to say what everyone’s thinking and she will always speak her mind. My sister Kimi is autistic, and she’s part of the reason I started this program. Kimi has impacted my life in so many ways, and I wouldn’t be where I am today without Kimi or the rest of my family.
We’ve had the pleasure of knowing you and your family for over 12 years now! How did you first get connected with Autism Empowerment?
I was personally connected through my mom wanting to find more opportunities for my sister Kimi and that led us to Autism Empowerment.
In 2015, you were a founding member of the Autism Serves Kids Care Club, which means you were about six years old when you started! What do you remember most about that experience?
I remember the wide range of activities we did— everything from making care packages to repairing fences. Each event felt meaningful and made a real impact.
One of my favorite memories from volunteering at Kids Care Club was when we were making kindness cards. We were told to write something nice on these cards, and I looked over at my sister’s card, and it said, “I hope you’re fine.”
Why is volunteering important to you?
Volunteering is important to me because you get this opportunity to make a difference and create a sense of community with the people around you. Through volunteering, my family has been able to meet some of the most amazing people and it has given us so many opportunities.
You wanted to bring back a volunteer program after Kids Care Club paused during the pandemic. Why was that important to you?
This program was important to me because some of my favorite memories as a kid were from Kids Care Club and often this program felt like one of the only places my family was able to be unapologetically ourselves.
Bringing this program back, I hope to give neurodivergent teens and young adults their own space to be unapologetically themselves. Being recently diagnosed as neurodivergent gave me even more of a drive to get this group started.
What were your first steps in starting Autism ServesHelping Hands?
When I first had the idea of starting this program, I was at school and they were asking about our experience with volunteering. I had mentioned my own experience with the Kids Care Club.
I had remembered how much that program meant to me and my family. I really wanted it to come back, but I knew the members from the Kids Care Club were teens or young adults now and they couldn’t really participate in Kids Care Club because of age.
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This was when I got the idea about having a volunteer program specifically for neurodivergent teens and young adults. My mom initially reached out to John and Karen Krejcha at Autism Empowerment. I met with them and presented my idea and was so pleased to hear they were on board for bringing this program to Autism Empowerment.
What are the biggest differences and similarities between Kids Care Club and Helping Hands?
Differences: Some of the biggest differences between Kids Care Club and Helping Hands will be the age range of our members. Helping Hands is focused on neurodivergent teens and young adults. There’s no specific age range, but we would at least like our participants to be 13 or older.
Additionally, Kids Care Club had a component of service learning before many project activities. Our volunteering and leadership-building project activities will be more immediately hands-on.
Similarities: Our similarities include a variety of fun volunteering events where we’re making a difference in our community, and making new friends along the way. We will still promote being Ambassadors for Acceptance of All Abilities to others in our community but our new green, red, orange and purple shirts will have the Helping Hands logo on the back.
Similar to Kids Care Club, because we can’t provide all accommodations, we ask participants to bring their own support person if they deem it necessary.
How do you ensure that people of all abilities, including nonspeaking individuals, can participate?
We try our best to be as accommodating and inclusive as we can by having different kinds of activities and task-based volunteering roles so more people can participate. We let our participants know the details of each activity in advance so they can decide whether the volunteering opportunity is appropriate for them or if they need extra support.
Participants can bring up to two support people if they need extra assistance. Everyone is encouraged to participate in the way that works best for them.
Are there any age or ability limitations for members?
Since we are planning to gear our activities for teens and young adults, we want our members to be 13 or older.
However, we were asked during a recent kick-off meeting on Zoom what we considered “young adult,” and as we want to be inclusive to as many people as possible, we don’t really have an upper-age cut-off for our volunteers.
Where will Helping Hands be based, and who can join?
All of our events and activities will be located in the Vancouver, Washington area, however everyone who is willing to travel is welcome to come and participate.
You designed the logo for Autism ServesHelping Hands. Can you tell us about it?
When creating the logo for Helping Hands, I really wanted to show the volunteering and giving back aspect, which led me to have the shape of hands holding a heart to show the giving and kindness we want to spread in our community.
I then decided to put the rainbow infinity sign in the middle to show our core values of inclusivity and creating a more inclusive world for people on the spectrum.
What kind of volunteer projects are planned for the first year?
We’ll have activities every month—making caring cards, sorting donations, park clean-ups, and more! We want to offer a variety of ways for people to get involved.
Volunteering started in March 2025, making kindness cards in partnership with the Fort Vancouver Regional Library. We’ll be accepting the Autism Acceptance Month Proclamation for the City of Vancouver on Monday, April 14th, and also will do a park clean-up that month. We will partner with Open House Ministries in May.
Everyone who registers will receive a copy of our schedule, which will be updated regularly. We’re excited to partner with other local nonprofits.
Do participants have to commit to every project, or can they choose?
All of our participants are allowed to decide which events they would like to attend. Some events have a limit to the number of people who can participate, so we do ask if someone can’t come to an event to tell us so we can give someone else an opportunity to join.
Do you plan to offer any virtual volunteering opportunities so that people outside the area can participate?
As of right now, we don’t have any virtual volunteer opportunities planned but there could be opportunities in the future for this type of activity, especially if there is a lot of interest.
What are your goals for the program?
My biggest goal is to create more accepting spaces and volunteer opportunities for neurodivergent teens and young adults. I’d love to see the program grow and expand to other communities!
Tell us about your recent launch in late February 2025.
Our launch for Autism Serves - Helping Hands was a kick-off Zoom meeting to give more information about our program and to get people interested in this project. If you missed the meeting, you can still view it on our website.
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Because we will be offering new projects in most months, people are invited to join at any time. During the first year, our membership is free thanks to Autism Empowerment donors and includes a free t-shirt for each member and up to two parents or caregivers.
If someone wants to get involved or has questions, what’s the best way to connect?
The best way to connect is preferably through email, but you can still contact us through our social media or website.
Is there anything else you’d like Spectrum Life readers to know?
Just that I’m so excited to get this program running and to see where it goes!
Autism Serves - Helping Hands is shaping up to be an incredible opportunity for neurodivergent teens and young adults to make a meaningful impact while being part of a supportive, accepting community.
If you’d like to learn more or get involved, visit Autism Empowerment’s website today!
“Handy” Karen Krejcha is a co-founder of Autism Empowerment, where she serves as Executive Director. She is Editor of Spectrum Life Magazine, host of the Autism Empowerment Podcast and founder of Spectrum of Voices LLC. Karen was diagnosed on the autism spectrum in her 40s, after the diagnosis of her two children. She has been married to co-founder John Krejcha for over 32 years and is devoted to being a loving wife, mom, daughter and ambassador of acceptance and empowerment worldwide. https://linktr.ee/karenkrejcha
23rd Annual Autism Walk
Sunday, April 27th, 2025 at Oaks Park Fun Starts at 9am Walk Starts 11:00am • Rides Open at 1pm
A Day of Family, Fun and Community! Register for Free Online
Costume Corner • Face Painters • Art Activities Quiet Area • Obstacle Course • Cosplay Characters Community Resource Exhibitors • and more! Everyone deserves a full and meaningful life. PEACE NW can help you have the life you dream of.
Providing guidance, training & support around intellectual and developmental disabilities. • 360-823-2247 • info@peacenw.org • www.peacenw.org
Autism DiAgnosis is Broken
Asking Autistics: Improving the Autism Diagnostic Assessment
By Lyric Rivera, aka NeuroDivergent Rebel
As an Autistic Person, something that has bothered me since going through the diagnostic process over eight years ago now is that the tools used to “assess Autism” in Autistic People aren’t very “Autism Friendly,” leaving much to be desired.
Our current diagnostic process is part of an ineffective, oppressive system (peddled by institutions clinging to outdated frameworks that fail Autistic People at nearly every turn). It’s time to disassemble these myths, confront these tools’ negative, anti-autistic biases, and demand access to better, more affirming screening methods.
The Criteria is Rooted in Stereotypes (that are not the reality for many Autistic People)
The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) and International Classification of Diseases (ICD) fall short:
These criteria were built on observations of white, cisgender male children (who fit a narrow stereotype of “autistic behavior”) systematically erasing the experiences of those who exist outside the “autistic boy” trope.
If you are an Autistic Person like me, who doesn’t look like “textbook Autism,” you’ve likely been forced to learn how to mask to survive in a neuro-normative world. This means if your meltdowns may be internalized, or if your stimming may be subtle—then you may be told you’re “not autistic enough” (or not autistic at all) by the people around you when you attempt to disclose being Autistic to them.
The Medical Model: Pathologizing Identity, Ignoring Oppression
Autism isn’t a disease—it’s a brain type. However, the diagnostic process is steeped in negative, deficits-based, pathological language, which frames Autistic People as being similar to broken machines needing discarding or repair.
Clinicians fixate on “deficits”—social awkwardness, sensory sensitivities, obsessive tendencies, and motor and communication differences—using only deficiency-based language (framing every Autistic trait as a negative, even those that are positive or neutral) while ignoring our strengths, creativity, and unique ways of experiencing the world.
Worse, this model ignores systemic problems created by living in a society that refuses to accommodate us.
Masking: The Invisible Barrier to Diagnosis
Standardized assessments like the Autism Diagnostic Observation Schedule (ADOS)? They’re designed to catch Autism in children who haven’t yet learned to hide their Autistic traits.
For those of us who’ve spent a lifetime camouflaging to avoid bullying, rejection, or worse, these tools are less effective at best and useless at worst.
For those who can hide their Autistic traits, masking can be both a skill and a trauma response. Unfortunately, clinicians sometimes invalidate us when we mask by saying, “You made eye contact during the assessment, so you can’t be Autistic.”
Imagine telling someone they’re not hungry because they’ve mastered hiding their starvation. Or telling a blind person that they “now can see” because they’ve learned to navigate the world around them without sight.
Neither statement above would be true, similar to how Autistic People can hide their Autistic traits (or develop coping mechanisms that allow them to function in the world). They’re still Autistic, even when those Autistic traits are not apparent to the people around them.
Adults Are Ignored By This System
The diagnostic criteria demand “evidence from childhood.”
But what if your parents don’t notice? What if they’re no longer with you?
Continued on next page
What if you were a “gifted” kid who flew under the radar?
What if you’re among the thousands of AFAB (assigned female at birth) people socialized to be quiet, compliant, and people-pleasing?
Adults are often told we are “too articulate” or “too successful” to be Autistic—without understanding all the struggles, pain, or coping skills enacted to allow a person to function in the world. The system infantilizes and stigmatizes us, refusing to acknowledge that Autistic People can lead happy adult lives (and that we don’t suddenly lose our Autistic traits when we turn 18).
The Trauma of Diagnosis
The assessment itself is often dehumanizing. Clinicians dissect our childhoods, scrutinize our quirks, and reduce our identities to a checklist of deficits. Rarely do they ask, “What do you need?” or “What are your strengths?”
What would a better tool look like?
Instead of tweaks to the existing system, we need a radical overhaul led by Autistic People and designed to uplift, not pathologize. Better tools would:
• Be Neuro-Inclusive, using less stigmatizing language
• Focus on understanding needs instead of only deficits
• Account for masking, trauma, and cultural differences
Unfortunately, we’re not there yet. Until then? We’ll put our own lived experiences on a clinician’s checklist. We’ll build communities that celebrate Autistic joy, creativity, and resilience, and we’ll keep shouting unapologetically: “Nothing about us, without us.”
In the spirit of thinking of the future and creating better screening tools, I asked my community:
#ActuallyAutistic #AskingAutistics if you were to redesign the questions on the Autism Assessment, what’s a question you would ask?
My Answer: How much time can you spend on an activity you love uninterrupted?
Responses from #ActuallyAutistic contributors:
(Editor’s note: Out of respect to Lyric and #ActuallyAutistic contributors, capitalization preferences and responses are typically shared as submitted and are a sampling of many responses. To see more, visit https://www.facebook.com/NeurodivergentRebel)
I’d have to think about it, but one thing springs to mind. If it’s a multiple-choice questionnaire, I would at least add this answer option to every question: “It depends.” – Anonymous
Explain your process for choosing which foods to take, how you put them on your plate, and how you eat them. Include things that must be a certain way and things that you absolutely cannot tolerate. – Heather Hoffmann (she/her)
Do you often feel confused about what others seem to understand? – Nancy Burzo
Don’t have a specific question in mind straight away, but I’d say that questions should always be reworded or have options for rewording so that we can answer them more accurately. This is because of our language interpretation. The consultant who diagnosed me was excellent. But the consultant who diagnosed my kids was rigid, and so much information was lost in translation because I struggled to answer the questions.
So basically, more accessible wording for both adult diagnosis and children’s diagnosis. Especially as there is the likelihood of parents being ND. – Mansata Holmes (she/her/they/them), AuDHD and mother of Autistic PDA and AuDHD children
Can you hear electricity?– Aimée (she/her)
Do you have difficulty choosing answers on these tests?
– Shelley K (they/them)
Have you prepared a folder of evidence of your Autistic-ness? Can I see it? – Charlie Park @GivesNoSpoons (she/they)
What mechanisms have you developed to get through a day in public (work, church, school, etc)? Because it turns out that NTs don’t have to do this – Allyson Louise (she/her)
Do you say thanks and apologize to the furniture and appliances in your home? And your car? Examples: Microwave beeps, “Thanks.” Stub toe on couch. “Sorry.” Have trouble starting car– “Good job! I *knew* you could start–I promise I’ll get gas tomorrow.” Like that.
– Michelle Mason Rocks
Instead of asking, “Do you have any difficulties with daily hygiene tasks or remembering to take medications?” ask, “What does your morning routine look like? How do you remember to take medications?” Basically, any question that asks “Do you have difficulty with..” or “Can you remember to do ...” change to “Tell me about ...” – Melanie Mills (she/her), from Melbourne, Australia
Do you have difficulty answering either/or questions because everything is nuanced, and the best answer is usually “It depends”? – Robin Mayall (she/her)
Do you have trouble with keeping memories of anything that doesn’t interest, engage or fulfill a need for you, sensory or otherwise? Do you feel physically stressed or threatened when people do or say anything to be controlling towards you?
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Do you have sensory issues that interfere with sleep, focus, emotional regulation, hygiene and or eating? Do you have trouble sensing inner sensations/signals of the body at times like they’re delayed and then feel an overflow when you finally feel them? Examples: Hunger, Thirst, Tiredness, Pain or Irritation (Physical), The need to use the bathroom, Feverishness (when you’re sick). Do you ask clarifying questions when others don’t give properly understandable context? (This is more when you don’t understand enough about the subject mentioned to follow the subject without confusion).
How aware are you of the way that your tone and expression presents to others compared to how you feel and your intentions?
A) People often misinterpret me even though I feel I was being direct.
B) Not sure if they thought I was angry but they didn’t seem to be taking the information well.
C) I’m pretty confident that people who know me well enough will know my meanings, manners and intentions better than strangers will.
D) I feel like I can get what I mean to others across and have how we both interpret it mean almost exactly the same thing, regardless of knowing them that well.
If your social battery was doing well, would you rather be around people you know better or people you don’t if you went somewhere for the day? – Theynonymous
Do you have obsessions and passions that literally feel like the air you breathe, they are that important to you? Do you find yourself just totally immersed in your most... passionate interests daily, where you cannot think of anything else nor do you ever want to do anything else because you just love your topic of interests that intensely? – Stacey Ruwoldt (she/they), Autistic adult
Stop including questions that ask about what people think of me. Like “I am perceived by others as....” How would I know how I am perceived by others if they haven’t told me?! I don’t know how I am perceived by others. I would have to go and ask them. – Genevieve (she/her)
Do people often act offended by you and you have no idea why? – Beryl Wysocka
What are your plans for the rest of the day after this appointment? – Michelle Holmes
All the questions need a “let me explain” option. – Abi A. (she/her)
How do you feel about shoes and socks? How do you choose your clothing? What difficulties do you have with grooming,
hygiene, and housework? What sounds, smells, or textures bother you, that other people don’t seem to mind? What rules and preferences about food do you have, that other people don’t seem to have?
What fictional characters do you relate to, and how are they like you? Do you have a musical playlist going in your head? Do you see patterns that others don’t seem to see? Do you have secret hand signs or invisible stims? What do people think is weird about you, and do you think it is? What do you think is weird about other people? What’s your best hypothesis as to what’s really going on with you, and why do you think that? What help would be most helpful to you? – Anonymous
Were you bullied as a child? Do other people think you are weird? Do you often get in trouble for things you either didn’t do or did but didn’t understand they were trouble? Do you prefer animals to people? – Laura Gross
If you were really focused on an activity and someone interrupted you or made you switch tasks how would you feel? Are you bothered by familiar people touching you with high fives, handshakes, hugs, etc? The questions that start with “Other people often say that you ......” need to go because they don’t tell me things because it could be rude or upsetting. – Lana Linnett (they/them)
Have you ever seriously considered that you might not be human? – Kaitlin Marie (she/her)
How does peer pressure affect you? – Sarah Capper (she/her)
The questions feel ‘tricky’ like math or word problems. They’re so confusing sometimes where a lot of mental gymnastics are required to choose what I would do if I weren’t masking all the time versus what I actually do. – Cheryl (they/them)
Do your parents call you “stubborn”? – Delia Tetelman
Have you been overthinking all of these questions and struggling to answer because you need clarification of details not provided? – Sara Fierst (she/her)
To join in the conversation, here is the link to the original Facebook post: https://bit.ly/aaautismassessment
This article is part of a continuing regular series at Autism Empowerment and Spectrum Life Magazine called #AskingAutistics by Lyric Rivera. To read past articles and get connected with autistic community members, visit www.spectrumlife.org/askingautistics
Lyric Rivera (they/them) is an Autistic self-advocate from Texas who runs the neurodiversity lifestyle blog Neurodivergent Rebel. They are also the founder of NeuroDivergent Consulting. Lyric is known as the pioneer of the #AskingAutistics hashtag, where simple questions prompt open-ended responses that Autistic people can easily chime in with, and invites participants to engage each other in conversations related to the topic. This hashtag connects NeuroDiverse people who would not otherwise have a reason to engage with each other and fosters a collective understanding of the Autistic experience. www.NeurodivergentRebel.com
A Day in the Life of Rory Bristol, Educator, Advocate, and Creator
by Jenny Bristol
Rory Bristol is a U.S.-based writer, educator, and advocate who spends his time learning, exploring, creating, and helping others. He lives at the intersection of various mental health, neurodivergent, identity, and childhood diagnoses and experiences, and uses his unique insight and pattern finding ability to help others make sense of their own lives, leading them down healthier paths.
Because of being autistic, having ADHD and schizophrenia, coming from a challenging background, and having various other traits, he can find something to relate to in just about anyone.
Rory’s drive to share his knowledge with the world and one-on-one with individuals combines well with his natural non-judgmental stance, providing a safe environment for others to open up, make themselves vulnerable, creating room for them to grow.
And, he uses his creativity to replenish his own energy, taking deep dives into topics of interest, losing himself in writing sessions, and creating fantastical worlds and scenarios for others to enjoy through his stories and his Dungeons & Dragons campaigns.
What does a typical workday look like for you (or, if there isn’t a typical day, describe one that is representative of your life)? What does a typical non-workday day look like?
My work days tend to be very short. I teach coping skills in 1-2 hour sessions, either in one-on-one appointments or in groups. I mostly teach practical skills for self-management and improvement, so I get to tell a lot of stories, because storytelling is one of the most effective ways to demonstrate how skills can be practiced, applied, and reinforced.
While I love telling these stories, it’s also very draining because I am customizing my examples for my clients, to show how the skills are useful in their lives, rather than generalizations.
Non-work days (which are most days because I’m disabled) include a lot of writing and creativity. It doesn’t make money in and of itself, but it feeds my heart, and makes my work possible.
What hobbies or interests do you have outside of your work?
I love to make things. I whittle, crochet, sew, and I’ve recently taken an interest in making my own paper/cardboard boxes for gifts, playing cards, etc.,
to name a few. I also collect math rocks (dice), and have a substantial collection, including one encrusted with Swarovski crystals, metal ones, and color-coordinated and themed dice.
I think my most intense special interest, though, is likely the human as a creature. I read medical studies, follow the work of various researchers, and generally dive deep into any part of the human mind, body, and/or social structures I can get my hands on.
How does being autistic help or hinder your work or hobbies?
Being autistic is usually very helpful. I’m able to collect a wide range of data, sift through it, and find common threads, stories, and solutions. This can look like predicting outcomes and problems, or understanding the underlying challenges a client is facing, even when they can’t articulate it themselves.
Unfortunately, my autistic brain and my neurointersectionality don’t play well together sometimes. Having psychosis means that I’m even more driven to seek specificity, accuracy, and correct information (even when compared to other autistics), because fact-checking is how I manage my psychosis.
Having ADHD in the mix means that sometimes I’ll have trouble doing tasks that were fine the day before, and I have no less than a dozen crafts going at once, which can sometimes make me feel like I’m wasting time rather than chasing my passions.
What kinds of changes or accommodations do you make in your life to allow you to be successful?
Many of the accommodations I use are small, but they add up in big ways. The single largest accommodation I have is working from home. I took my job on the condition that I will never work in the office, and it has meant I’ve worked in my current position longer than any single other job I’ve had.
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Photos courtesy of Rory Bristol
Beyond that, my accommodations are mostly built into my home and family dynamic. I listen to a lot of music to provide low-level constant stimulation; I play puzzle games to allow myself time to think about things; I take a lot of breaks to let my brain play with my thoughts, rather than forcing productivity when I’m not up for it; and I keep a fairly flexible schedule/routine so I’m able to pivot and work on each project when I’m actually driven to do it.
A few changes have really helped over the long run. Learning to use a calendar to track to-do lists was hard, and it took a long time, but it has been a huge benefit, even if it’s not perfect.
I tend to habit stack a lot, like taking my medicine when I put in my retainer, or doing the litter box right before I shower. This helps me create solutions as part of my routine. For example, cleaning the litterbox leaves dust and scent on me, which makes me subconsciously avoid the task, but pairing it with my daily shower means that I don’t experience the lingering effects, and still accomplish the task.
Have you ever experienced discrimination or bullying because of your autism or autistic traits?
Oh, for sure. I certainly didn’t realize that I was experiencing this at the time, however. For years I would say, “I wasn’t really bullied as a kid,” but that ended when I learned I was autistic and that most of the mistreatment I had faced wasn’t normal.
I genuinely thought that people being judgmental or cruel were socially acceptable ways to critique my behavior. Now I know better, of course, but I still wear a lot of autistic masks that I created to survive things like school as a kid.
What advice would you give to a young or teenage autistic person to help them live their best life, and/or what advice would you give an autistic adult to help them feel supported in their continuing journey?
Younger autistics: There’s no such thing as a “normal” person. You’re a normal you, and that’s a beautiful thing.
Older autistics: Just remember, our problems may not be our fault, but they are our responsibility to fix. Take control of your life, and a lot of suffering will fade. If you need help, there’s no shame in that.
I am my best self with the support of both therapy and community. You don’t have to do it alone. If nothing else, consuming content by other autistic folk, on social media or in other formats, can expand your understanding and enable you to find novel solutions more easily.
What advice would you give parents of autistic kids about the best ways to support their kids in becoming their best selves? What advice from the so-called “experts” do you think parents should ignore?
The advice I would give parents is to tell their kids when something they do is because they’re autistic, and celebrate it with them.
No matter if it’s a tic, or being overly frank, tell them why it might not be helpful in certain situations, sure. But also celebrate what that trait can do for them as a person. If a tic makes them feel better, celebrate that they feel better when they do it.
If they are honest to a fault, explain that some people might get their feelings hurt, but celebrate that it can mean clearer communication and fewer misunderstandings.
Validation and teaching go together much more effectively than invalidation and shame do.
Any doctor, clinician, or other “expert” who tells you they can “fix” your kid is lying to you. They are peddling control, not improvement, and that kind of “improvement” destroys your kid’s trust in you as a source of help, which inevitably deteriorates into trauma.
What was one piece of advice you received that helped you be comfortable with who you are?
That our thoughts don’t define us in a vacuum, and neither does anything else. Our situation, beliefs, actions, thoughts, emotions, and relationships all affect each other, and we might feel like the only “real” us is inside our heads.
But in the end, it’s all the real us, and taking steps to unify all of those different versions of ourselves into the same person is much more powerful than being able to mask “appropriately” for every situation in the world.
If you could go back in time, what would you tell your younger, undiagnosed self?
I think about this sometimes, and the answer tends to change. I really like who I am, and I might have turned out differently if I did, in fact, tell my younger self something. But for the sake of the question, I wish I had known that I was, in fact, a “normal” kid.
People are afraid of giving their kids labels, but I would rather have known that I have learning disabilities, like ADHD, dyslexia, dyscalculia, etc., and that I have a different kind of brain (read: autistic), instead of thinking I was broken and needed to compensate for being such.
It’s better to know you’re a normal zebra than to think you’re a weird horse.
What kinds of activities give you mental or emotional energy? What kinds sap your energy? Where do you lose time and get lost in the activity, getting into a flow state?
Learning things, playing games, and spending time in nature are my most consistent chances to recharge. I am most likely to lose myself in a flow state when telling stories. Whether I’m playing Dungeons & Dragons or sharing examples of how and when to use mental health skills, the stories are the part where my brain just clicks in and thrives.
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I have written between 10,000 and 16,000 words in my fiction projects in a single day more times than I can recall, because once my brain latches on to the story, everything else falls away.
I lose energy when I’m not creating, or if I feel isolated in my situation. If I feel shut down or closed out by the person or people I’m with, I might as well leave, because I’m no longer going to get anything from the situation, and I’ll be using all my energy just to not upset other people.
What is a misconception about autistic people that you would like to dispel? Or, what is one thing that you wish society at large knew about autistic people?
I wish more people thought about autistics complexly. We aren’t limited by our neurodivergent traits, special interests, or skills. We also have hopes, dreams, and imagination. We have mental health struggles, and heartbreak, and every kind of emotion.
Too often people have assumed I don’t care because I’m not taking action, when the reality was usually that I was overwhelmed by how much I cared. Be curious with your autistic loved ones. Ask them what’s going on in their heads.
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If you could do anything and get paid to do it, what would you do and why?
I’d be a teacher, focused on creating free online content to teach people skills for managing emotions, social situations, self-regulation, and even crisis management. I already do this for my work, and it chafes me that the service is locked behind having health insurance which covers such a service.
I think everyone deserves to be the best version of themselves, no matter their ability to pay or to jump through endless administrative hoops to gain access to it. That’s why I started my Mental Health Tip of the Day (currently published on Instagram), so people can follow my work in short bits without the barriers to care.
How do you use your lived experience to help others learn about themselves and develop skills to deal with the world? What is it like being an advocate for different groups of people?
As a Peer Support Specialist (a certified but unlicensed credential), it’s my job to share who I am, and what has worked for me. I use my own experiences to foster empathy and to educate people, because I can see where they’re coming from, the challenges they’ve faced, and the myths they believe about the world around them.
I can see these things because I’ve lived them. Even when I’m working with someone who has an uncommon struggle, I can usually relate enough to contextualize what would otherwise be overly clinical information and present it in a way that feels more real, more approachable to that person.
How does being at the intersection of many different identities and diagnoses inform how you interact with others and society at large?
I think the biggest thing is that I see the world more broadly than many others do. I think of most of the world in terms of spectra instead of binaries, and it means that I’m less judgmental, make fewer assumptions, and make people feel safer around me as a result.
Of course, this has its downsides, and I can get overwhelmed by the sheer amount of data generated by being in a room with a group of people. Taken in its totality, though, I have a powerful intuition for patterns, data, and stories which is only possible because I allow information to come to me whenever possible without judging it as it comes in.
However, this does make it difficult to watch television/ movies with others, because I tend to see the plot twists well ahead of time, and then I get excited about it, share it, and spoil the story for others if I’m not careful.
Is there anything else you’d like to share?
The single biggest thing I want to remind people is that everything has a reason. Everything is caused. If you have an autistic loved one, one of their parents was likely autistic. If your autistic kid is changing their behaviors, something has changed.
It might be growth, education, or puberty, but it could also be abuse, mental health struggles, or a loss of trust in friends
or family. Always observe changes and invite discussion in open dialogue that creates a space where they can share their experiences.
Your long-term relationship with that person may well be defined by how safe they feel sharing with you, and their practice in doing so.
Model communication with your friends and family by talking about your feelings, especially complicated ones, so they can learn from your example, and share with you in turn. It’s easily one of the best ways to improve and maintain healthy relationships of all kinds.
What are the best ways for people to connect with you?
You can find links to my work at RoryBristol.com, my email is rory@rorybristol.com, and I post my Mental Health Tip of the Day daily on Instagram via @uproryus
This interview is part of an ongoing series, A Day In Our Lives, Actually Autistic Adults in the Real World. To read recent interviews and the original anthology, visit: https://www.spectrumlife.org/adayinourlives
Jenny Bristol is a Gen-Xer who was diagnosed autistic at age 45 and has been having a series of lightbulb moments ever since, finally understanding her entire existence. She is an autistic advocate, freelance writer and author of several books, Editor-in-Chief of the geeky parenting blog GeekMom.com, and parent to two incredible autistic adults. She works hard to promote the social model of autism rather than the medical model, encouraging people to understand that a child’s behavior is a form of communication and a reflection of their inner experience, not something to be punished. Visit www.JennyBristol.com.
Rebecca Burgess is a comic artist and illustrator working in the UK, creating award-winning published and small press work. Along with drawing comics for their day job, Rebecca also loves drawing webcomics in their free time. Being autistic, they are particularly passionate about bringing more autistic characters into comics and stories! Outside of drawing comics and cuddling their cat, Rebecca also loves playing RPGs with friends, going on deep dives into history and growing vegetables in their humble Bristol garden. Visit www.rebeccaburgess.co.uk
www. spectrumlife.org
Autistic & ADHD: A Different Sense of Age
By Dr. Anson Service, Psy.D., LMHC, aka Neurodivergent Doctor
I am 51 years old; however, when it comes to maturity, I feel like I am 35, and sometimes 12. Am I experiencing delusional thought processes? Am I kidding myself? No. I am experiencing what many Autistic and ADHD individuals report feeling: that is, they feel younger than their chronological age.
This phenomenon can be described as an internal sense of emotional, social, or psychological immaturity compared to their neurotypical peers. This can lead to making social mistakes and feeling like we are out of place.
While this phenomenon isn’t universal, it is a recurring experience for many of us, often tied to the neurological differences in how we process the world. Let’s explore the potential reasons behind this and the science supporting it.
1. Developmental Asynchrony
A common characteristic in both Autism and AttentionDeficit/Hyperactivity Disorder (ADHD) is developmental asynchrony, which is the uneven development across domains such as cognitive, emotional, or social abilities. This means a person can be highly intelligent with a high intelligence quotient (IQ) but find school painfully boring.
It can mean being old enough to be expected to control your emotions, but “losing it” with meltdowns in front of other people. It can also mean having social problems and avoiding being around people or liking to talk to them.
This asynchrony often results in gaps between intellectual understanding and emotional maturity, and again, this can really make many neurodivergent people feel “out of sync” with their age group. As such, they may have a long history of “hanging out” with or befriending people who are much older or younger than they are.
If you have ADHD, you might have higher intellectual capabilities but struggle with impulse control, emotional regulation, or maintaining attention, which can make you feel behind in various life stages. Others may think you are immature or younger than you are.
In real-life circumstances, it might appear that everyone else is filling out college applications while you are just... doing stuff. When others are working hard at their 9-5 jobs, you may find yourself struggling with your part-time or “just a job” job.
I struggled with this as a young person. I always wondered how so many people could just find a career, go with it, and stay there for many years. I am always doing three different things at a time because I quickly become bored with the same job duties.
Some autistic individuals do extraordinarily well in certain specialized areas but simultaneously experience difficulty with social interactions, which can create a dissonance between their perceived age and actual life stages.
A 2015 study by Pennington and Ozonoff on developmental trajectories of ADHD and Autism noted that both groups show delays in executive functioning when compared to their neurotypical peers. It is well established that executive functioning helps regulate social understanding, emotional regulation, and impulsivity.
I have often found myself feeling the sting of social disapproval when I impulsively make or laugh at fart jokes like a 12-year-old. I will never ever grow out of my Mike Myers and Jim Carrey style humor, but in a world that is SO fast to judge and put someone down, especially if you are excelling and are rising in a certain area, these differences I have contribute to a persistent feeling of being “younger” than I actually am.
2. Differences in Emotional Maturity
Many individuals with ADHD experience heightened emotional sensitivity and difficulty modulating emotions (also known as emotional dysregulation), which may result in a feeling of emotional immaturity. Similarly, autistic people may struggle with understanding and processing emotions in the same way as neurotypical people, contributing to feelings of being emotionally younger.
ADHD researcher Dr. Russell Barkley posits that emotional self-regulation is often delayed in people with ADHD, by as much as 30% compared to their chronological age. This means that a 20-year-old with ADHD might function emotionally as though they are 15 years old.
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3. Hyperfocus and Interests
Another factor has to do with the intensity of special interests or hyperfocus in both autistic and ADHD individuals. Often, these interests may be perceived as “childish” by societal standards, particularly if they involve screen media or activities that are traditionally associated with younger age groups (like cartoons, video games, or collecting certain items). However, these intense interests provide a great deal of comfort, structure, and joy.
Personally, I was very much into Hot Wheels as a child, but as an adult, I enjoy real cars and have owned hundreds of them. This is not considered childish. However, I have also had an intense interest in model railroading and tiny-town building, which would be considered childish to many people.
With some autistic individuals, special interests can create a sense of timelessness. When a person immerses themselves deeply in something that provides comfort, they may not align with the expected, typical aging process, which can draw attention to those differences, and as a result may feel “stuck” as a younger version of themselves.
ADHD individuals may also experience a similar disconnect when engaging in hobbies and activities they hyperfocus on, often disregarding typical age-appropriate activities because their focus and passion don’t align with social expectations.
4. Difficulty With Life Transitions
Both ADHD and autistic individuals often find transitions between life stages challenging. Whether it’s the move from high school to college, entering the workforce, or moving into more socially complex adult responsibilities (such as marriage or parenting), these transitions can be overwhelming and delayed for many.
A 2013 study in the Journal of Abnormal Child Psychology highlighted that ADHD individuals often face significant difficulties transitioning to adulthood, including delayed independence, employment challenges, and an overall slower pace in reaching traditional milestones.
These delays might create the feeling that they are not as “adult” as their peers, further reinforcing the sensation of being younger. And if people do not see you as “adult-like,” then they tend to treat you like a child.
5. Rejection of Traditional Norms
In some cases, the feeling of being younger may not stem from an actual developmental delay but rather from a rejection of neurotypical societal expectations. People with ADHD or autism might feel pressured to conform to traditional roles that do not resonate with them (such as having a high-powered career, getting married, or having children), and they may find more joy in less conventional pursuits.
Because societal markers of adulthood do not feel relevant or fulfilling, they may internalize this as feeling “younger” or less mature than their peers. Think of the movie Stepbrothers where the 35-year-old characters, played by Will Farrell and John C. Riley, try their hand at creating a global entertainment company, but end up running into some hilarious problems. After being scolded by their parents and siblings for being immature, they settle for traditional jobs that they feel have crushed their hopes, dreams, and souls.
Feeling younger than their age helps many individuals feel liberated as they reject rigid social timelines, often relating more to the carefree curiosity or playfulness commonly associated with youth. This can give them a sense of psychological youthfulness that diverges from the traditional concept of “growing up.”
While the feeling of being younger than one’s age is a complex and multifaceted experience for autistic and ADHD individuals, they have a unique experience with aging, one that doesn’t always align with neurotypical expectations.
Now, if you will excuse me, I must go play with my grandson now in his blanket fort. I hope you have a delightful evening sipping your old-person tea while you watch Wheel of Fortune
References:
1. Barkley, R. A. (2014). ADHD: Nature, Course, Outcomes, and Comorbidity. Journal of Developmental Pediatrics https://bit.ly/barkleyadhd
2. Pennington, B. F., & Ozonoff, S. (1996). Executive functions and developmental psychopathology. Journal of Child Psychology and Psychiatry, and Allied Disciplines, 37(1), 51-87. https://bit.ly/penningtonef
3. Sparrow, E., & Solomon, J. (2024). ADHD transitions: Navigating from adolescence into early adulthood. MHS https://bit.ly/mhsadhdtransitions
To read other columns by Dr. Service, visit: www.SpectrumLife.org/neurodivergentdoctor
Check out his YouTube channel at www.youtube.com/@NeurodivergentDoctor
Dr. Anson Service is a licensed mental health counselor, and part of a team that assesses individuals for autism, ADHD, and more at Adventure Psychological Services. Dr. Service has written for various magazines and authored several books and is happy to further educate others on autism and other areas of neurodiversity. He and his wife have raised three young men and are now raising their dog, Luna. www.neurodivergentdoctor.com
www. spectrumlife.org
Photo courtesy of Daniel Downs
Lights, Camera, Autistic Inclusion!
Meet the Neurodivergent stars of Hold My Beer.
By Karen Krejcha
Spectrum Life Magazine’s Summer 2024 issue introduced readers to Hold My Beer, a Vancouver-based indie film blending humor, heart, and craft beer culture with authentic neurodivergent representation. Screenwriter and director Brian Tashima, known for his Joel Suzuki book series, collaborated with local musicians, actors, and filmmakers to bring this story to life. The result? A unique and heartfelt comedy-drama that struck a positive chord with the community.
Fast forward to January 23, 2025, and the sold-out premiere at Kiggins Theatre proved that Hold My Beer is more than just a film—it celebrates creativity, connection, and the power of embracing neurodivergent perspectives in storytelling.
Now, as the film prepares for its wider release, we’re catching up with three of the film’s lead actors—Andrew York (Val), Ethan Blackwelder (Sky), and Ian Engelsman (Jess)—to hear about their experiences on set, how being neurodivergent shaped their performances, and what’s next for them.
Unlike many productions, where neurodivergent representation is an afterthought, Hold My Beer actively embraced authentic casting. Nearly half the cast and crew identified as neurodivergent, providing a unique and supportive filming environment that allowed actors to bring their personal experiences to their roles.
In this conversation, Andrew, Ethan, and Ian share their journeys in acting, the challenges and triumphs of being neurodivergent in the film industry, and why they believe increasing opportunities for neurodivergent actors and creators is essential for the future of media.
Hi Andrew, Ethan, and Ian! Thanks for agreeing to be part of this interview. To start, please introduce yourselves to our Spectrum Life Magazine readers.
Andrew: My name is Andrew York, I’m 22 years old, and I’m a children’s behavioral health professional in Vancouver, Washington! I love sports, pinball, and of course, advocating for the neurodivergent community!
Ethan: My name is Ethan Blackwelder. I’m 22, I live in Vancouver, and I was diagnosed with autism at the age of three. Outside of acting, I like to play video games, watch shows and movies, go out with friends, and hang out with my girlfriend, who I have been with for eight years. I work at Fred Meyer as a clerk, and I have been with the company for two years.
Ian: My name is Ian Engelsman. I was born in Milwaukie, Oregon. My parents and I moved to Battle Ground, Washington for a little bit, and then my brother was born
two years later. I was diagnosed with autism when I was three years old, and it was a bit difficult to try to find something that I could focus on and better my life—until music came, and the rest is history. [Ian is a talented musician and drummer.]
How did each of you first become involved in Hold My Beer? What drew you to the project?
Andrew: I first heard of Hold My Beer from my mom, who I guess just so happened to be in the sphere of people developing the project. I hadn’t been acting for some time at that point, but when I heard about the story and the message of Hold My Beer, I couldn’t help but look into it further!
Ethan: I became involved with the production when my mother got a call from Brian Tashima, the writer and director of Hold My Beer. I excitedly said yes because I found this to be a great opportunity to showcase my years of experience in the theater.
Ian: I remember a couple of years ago, Brian came to chat and asked if I wanted to take part in the short film. I had little acting experience, but did some scare acting with the Cinema of Horrors.
Can you tell us about the characters you play in the film? What do you relate to most about them, and how did you approach bringing them to life?
Andrew: I play Val, a young man approaching his 21st birthday, who doesn’t really have any direction in his life. Eventually, Val finds his purpose in brewing beer, a surprising hobby to say the least!
I feel like Val is a character many young people around the world can relate to, because I feel that in one way or another, we all hit that age where we don’t know where we want life to take us. I took some personal lived experience regarding the time in my life where I also didn’t really have a clue what to do!
Ethan: The character I play in Hold My Beer is one of Val’s closest friends, Sky. Given Sky’s personality when portraying him, I could tell that he is a rebel, kind, and willing to stand up for others when they’re feeling put down or put-upon. I feel like this character is similar to me, so he was easy to portray.
Ian: I’m gonna be honest. When I was reading the lines, I was like: “Sheesh, he’s uh kinda a jackass.” I mean, not like an actual one, you know. Of course, people on the spectrum can and will be brutally honest, not to hurt anyone; it’s just how
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their mind works. But playing Jess, I was like, “Man, am I actually that mean?” Playing Jess of course was fun.
Memorizing lines, dealing with unexpected changes, and managing sensory experiences on set can all be part of the process. Did you have any strategies that helped make things easier?
Andrew: I think the challenges actors face in filming all vary from person to person, but to embrace discomfort and even to embrace failure are the things I feel are always relevant advice when overcoming challenges.
As viewers will see in the film, there’s a lot of failure before there’s any success. As long as you learn from your failures and don’t shy away from them, you’re bound to improve!
Ethan: I spent time thinking about the character and finding ways how he and I are similar. As a kid, I was a part of a local children’s theater group called Journey Theater. During my time there, I developed an ability to handle unexpected changes, and this helped me throughout the production.
Ian: So when we did the cold reading, I was just reading the lines, and I’m thinking “So Jess was talking in third person?” I was confused at first, but went along with it. And I remember Brian and Dan saying it was originally a typo, but they loved it so much, they kept it.
What were some of the biggest challenges you faced during production, and how did being neurodivergent impact your approach to acting?
Andrew: I feel like my biggest challenge was definitely the lines. Pages and pages of lines in a row is a lot for somebody to sit down and just memorize. I can barely sit down to watch my favorite show, so sitting down and running lines again and again was a real challenge of mine!
I worked very meticulously on inflection and line pacing, and I think a lot of that attention to detail is thanks to the way my neurodivergence has manifested in me.
Ethan: Remembering my lines was my biggest challenge. I would practice with my family to help me to memorize them.
Ian: I would say it was, how is this going to turn out? I was thinking, “Will I do good? Am I doing too much?” But as soon as we were getting the flow of the process going, it went well for the rest of the filming. And when it came to my neurodivergence, I almost like I was trying to attempt to be something I’m not.
A large portion of the cast and crew were neurodivergent. How did that shape the filming environment? Did it create a different dynamic than what you’ve experienced in other spaces?
Ian: Yes and no.
Ethan: I have been around lots of people with varying levels of autism; this group was very fun to work with, and we were all supportive of one another. I felt a sense of belonging within this project.
Andrew: Everybody on set seemed to “get” each other in a way that I’m not quite sure could have happened elsewhere. Unfortunately, I feel the world has a long way to go before everybody truly understands neurodivergence.
By coming together and embracing a lot of what makes autism and neurodivergence so special, rather than shying away from it, I think we’re one small step closer to reaching that understanding.
Hold My Beer premiered at Kiggins Theatre on January 23rd. What was that experience like being there firsthand?
Andrew: It was pretty crazy to see a line around the block all waiting to see the film! A part of me was worried that some of them would boo me out of the building or something, but from start to finish, all I saw was smiles!
Some people came up to me afterward and gave me their testimony on how they really felt understood by my performance, and that was very touching to hear.
Ethan: I still remember it like it was yesterday; it was an experience like no other. It felt amazing how many people came and supported me.
What’s something you learned from being part of Hold My Beer—either about filmmaking, acting, or yourself—that you’ll carry forward in your personal life or career?
Andrew: I will always remember that even though Val isn’t a real person, his dreams manifest themselves in all of us, and it’s our job to chase them and make them a reality.
Hold My Beer started with a dream, and became a reality, and I’m sure there are lots more dreams just like this one that will only happen if the dreamer wakes up one day and decides they don’t want it to be just a dream anymore!
Ethan: It was a great opportunity to work with Brian. He had a vision of what he wanted to create and was also willing to be open to new suggestions. I learned to collaborate with all sorts of people, and this will help me in the future.
Ian: I’ve learned, at least in my point of view, that I can accomplish many things no matter if I am neurodivergent or not. Yes, I identify on the spectrum, but it has taught me to embrace it and not let it take control of my emotional thinking.
Why do you think it’s important for more paid opportunities to exist for neurodivergent actors, crew, and creators in the film and media industry?
Andrew: Neurodivergent people are people just like anybody else. The added benefit that comes from neurodivergent people is that they can bring a new perspective not often shown in the media. Existing in the shadows will never allow any community to share their unique perspective with the real world.
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Ethan: People that are neurodivergent exist in our community and we should be represented in films, so that we can have a voice and normalize people like myself.
Ian: It’s a blessing that, especially in today’s day and age, we are including people that are neurodivergent in many aspects of talent. I’m involved in many musical projects, and have used social media as a resume to broadcast my talents.
I mention this because it gives neurodivergent people better leverage for them to hold up against any challenges to the negative stereotypes of being neurodivergent. Doing the production of this film is a great example of this as well.
What are some ways the entertainment industry can better include openly autistic and neurodivergent talent? How can nonprofit organizations like Autism Empowerment help advocate for this kind of inclusion?
Andrew: Partnership is the name of the game. Collaborative efforts between different communities will allow each to reach heights not possible alone. Maybe Autism Empowerment can collaborate with a local acting coach and provide acting scholarships, or maybe they can collaborate with a local director or film studio! Community and collaboration can do so much!
Ethan: First, they need to create characters who are neurodivergent and portrayed by neurodivergent individuals. They also need to include neurodivergent writers and give us all the opportunities we deserve.
Ian: The entertainment industry should always be open to include people identifying as neurodivergent. I do believe that it isn’t shameful to be neurodivergent now that we are in a, I guess you could say, better culture today.
What’s next for each of you? Any upcoming projects or creative endeavors we should keep an eye on?
Andrew: I don’t have any acting projects lined up at the moment, but here’s to hoping Val lives on in the Hold My Beer sequel! I’d do that in a heartbeat.
Ethan: There are no projects that I’m involved in right now; however, I look forward to any projects that I might be a part of in the future.
Ian: I have no idea. But I know if Brian is wanting to do another film, I’m more than willing to work with him again.
Finally, is there anything else you’d like Spectrum Life Magazine readers to know?
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Ethan: It was an honor to play Sky and I hope I get to work with Brian in the future.
Ian: I’d like to say thank you for taking time to represent our community with this film.
Andrew: It takes a village for projects like these to come to fruition. I’m incredibly grateful for everybody who worked on Hold My Beer for all of their hard work. That being said, it also takes a village to support dreams like these once they become realities.
Want to support neurodivergent creators and indie filmmaking? Here’s how you can help:
Watch the film and subscribe on YouTube: www.youtube.com/@holdmybeerfilm
Visit the Hold My Beer website: www.HoldMyBeer.mov
Follow and share on Facebook: www.facebook.com/holdmybeerfilm
Become a part of Autism Empowerment’s new program, the Neurodivergent Creators Collective (see article on page 28): www.AutismEmpowerment.org/aencc
Please consider supporting local filmmakers, stores, lemonade stands, or any other dreams from people like Director Tashima, or even Val. It’s only with your support that they can grow!
While this article highlights Andrew, Ethan, and Ian’s experiences, they represent just a part of the incredible neurodivergent and neurotypical talent that brought Hold My Beer to life. From cast to crew, every person involved played a role in making this film a powerful statement on authentic representation in media.
Make a difference! Projects like Hold My Beer, the Neurodivergent Creators Collective and nonprofit organizations like Autism Empowerment thrive because of community support. If you’d like to help fund more inclusive storytelling, advocacy, and resources, please consider making a donation: www.AutismEmpowerment.org/donate
Every contribution—big or small—helps amplify neurodivergent voices and build a more inclusive future in media and beyond.
Karen “Quiet on the Set” Krejcha is a co-founder of Autism Empowerment, where she serves as Executive Director. She is Editor of Spectrum Life Magazine, host of the Autism Empowerment Podcast and founder of Spectrum of Voices LLC. Karen was diagnosed on the autism spectrum in her 40s, after the diagnosis of her two children. She has been married to co-founder John Krejcha for over 32 years and is devoted to being a loving wife, mom, daughter and ambassador of acceptance and empowerment worldwide. https://linktr.ee/karenkrejcha
By Karen Krejcha
AE’s Neurodivergent Creators Collective A New Era of Inclusive Storytelling
When I was a child, I delighted in stories about people from all corners of the world. It was easy for me to find books and movies about people who looked a lot like me, but feeling different inside, I was way more interested in learning about people who came from somewhere different. I always thought I’d somehow been born in the wrong place.
In our society, representation matters. For autistic and neurodivergent individuals, creative self-expression through storytelling—whether in film, theater, writing, podcasting, game design, or public speaking—is more than just an outlet. It’s a way for us to advocate, build confidence, and forge meaningful connections with others in our community so that we can be better understood.
For as long as I can remember, storytelling has been one of the most powerful ways to connect, advocate, and inspire change. Sharing our lived experiences allows us to make an impact, challenge perceptions, and build understanding. Yet, despite the growing push for diversity in media, autistic and neurodivergent voices are still vastly underrepresented—not just in front of the camera or microphone, but behind the scenes as well.
At Autism Empowerment, this is something we’ve wanted to change for a long time. From the very beginning of our founding, my husband John and I envisioned media as an essential part of our Autism Empowerment’s mission— whether through Spectrum Life Magazine, the Autism Empowerment Podcast, blogging, film, or other creative platforms. We’ve always believed that neurodivergent individuals should have the opportunity to develop their voices as storytellers, advocates, and leaders.
That’s why we’re so excited to introduce Autism Empowerment’s Neurodivergent Creators Collective (AE-NCC), a new initiative from Autism Empowerment designed to support and amplify the talents of autistic and neurodivergent creatives. This program has been years in the making, shaped by our commitment to advocacy, feedback from our community, and our partnerships with passionate neurodivergent artists and storytellers.
One of those partners is Brian Tashima, an accomplished author, musician, and filmmaker, whose work in creative industries and the neurodivergent community makes him an incredible collaborator for this project.
Another is Gwyn LaRee, a seasoned actor, writer, and disability advocate whose passion for inclusive storytelling is magnetic.
Together, we are building a community where neurodivergent individuals can explore creative fields, develop professional skills, and connect with like-minded peers in an environment that values collaboration over competition.
Through workshops, mentorship, and real-world creative opportunities, AE-NCC will help neurodivergent individuals gain the tools, confidence, and experience needed to pursue careers in storytelling, filmmaking, podcasting, digital media, and more. Whether you’re interested in writing screenplays, performing on stage, directing films, producing a podcast, or developing video games, there’s a place for you in this collective.
The virtual launch session on April 26, 2025 will be an opportunity to shape the direction of AE-NCC. While the program will grow and evolve based on community input, resources, and interest, the heart of the initiative remains clear: to provide neurodivergent creatives with meaningful opportunities to tell their stories, build skills, and find their place in media and entertainment.
I recently spoke with Brian and Gwyn about this inspiring new initiative—read on to learn more about the vision behind AE-NCC and how you can join, support, or collaborate:
Hello Brian and Gwyn! Thanks for taking the time to share this exciting new program with our readers. Would you each share a little about your background in storytelling, acting, and media? How did your personal experiences lead you to this project?
Brian: Hello! My creative background includes a lot of writing: novels, comic books, screenplays, songs, nonfiction articles, and a blog, all of which I’ve done extensively for many years now. I also co-host a podcast. On the production side, I’ve been involved in publishing, filmmaking, music recording, game development, and more. Combined with my work in the autism and neurodivergent community, this project just seemed like a logical next step. Gwyn was the catalyst, though!
Gwyn: I was one of those kids who fell in love with theater very early in life—especially musical theater. I was always very active in both community theater and my school
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productions. When I joined the Marine Corps, performing was no longer an option, but I kept creating through writing and music. In 2012, I began pursuing a professional film acting career and started this journey, which I still love.
Working in film and television is much more detail-focused than stage work, but I enjoy the nuance and the wide reach of the stories we can share.
How did the idea for Autism Empowerment’s Neurodivergent Creators Collective come about?
Brian: The concept for AE-NCC really came together after Gwyn was inspired by Autism Empowerment co-founder Karen Krejcha’s speech at the Hold My Beer film premiere. Gwyn approached me afterward—during a Battle Ground Film House meeting—and asked about getting involved with Autism Empowerment, possibly by guest-instructing some acting sessions. When I took her idea to the Autism Empowerment team, it quickly grew into the vision for a much broader program.
Gwyn: Brian and I met through the Battle Ground Film House group, and I was really excited about the possibilities sparked by his Hold My Beer series. After the premiere event, where I learned more about Autism Empowerment, I knew I wanted to become involved with this dynamic community right here in Vancouver, Washington.
I have worked with several nonprofit organizations in support of creators with disabilities, but I had never found a group near my home (La Center, WA) that focused on this.
The entertainment industry can be really confusing, with a lot of information that isn’t readily accessible—you usually can only get it through expensive workshops or on-the-job experience. With the Neurodivergent Creators Collective, I believe we can support the neurodivergent community and provide knowledge and resources that people starting out wouldn’t otherwise find so easily.
What excites you most about launching this program, and why do you think it’s important right now?
Brian: I’m excited about the opportunity to pass on my knowledge and experience to neurodivergent creators. There’s so much talent in this community, and sometimes it just needs to be nurtured in order to blossom. Our hope is that this program will lift up these creative voices and help them share their gifts with the world.
Gwyn: Now, more than ever, it is so important to share our stories and experiences with the wider community. Only through this kind of creative education and sharing can we foster greater support for both the arts in general and for disability communities in particular. Stories help explain our personal experiences in a very interactive way. I can tell
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you about my disabilities and how they affect my life, but that alone generally won’t teach you much or help you understand the barriers we face. If I show you, however—through relatable characters and a story—then real education happens, and it may even influence people’s future actions.
What are some of the key goals of the AE-NCC, and what kind of impact do you hope it will have on autistic and neurodivergent communities?
Gwyn: The Pacific Northwest is one of the most beautiful and dynamic areas of the country, in both population and natural surroundings. There may not be a lot of professional film or media projects being shot in our area currently, but through the Neurodivergent Creators Collective, we’ll be developing trained and experienced cast and crew members so that when those productions do return to our region, we have people ready to step right in.
In the meantime, we will also be creating new works that showcase the amazing talents of our members while we all learn together. We do this by meeting each of our creators “where they’re at.”
For example, if we have a member who wants to act but doesn’t have any experience, we will work with that person (using whatever learning approach suits them best) to teach the necessary skills. Another person might have tons of acting experience but needs professional marketing materials to help move their career to the next level—we can help with that too.
Writing, directing, setting up lights and sets, costumes, editing, post-production... these are all areas of interest, and we hope to provide professional guidance in those as well.
What age group is this program intended for? Is it primarily for adults, or will there be opportunities for youth and teens as well?
Brian: In the beginning, we’re anticipating that most of our content will be geared toward adults and possibly older teenagers, however depending on interest, capacity, and funding, we’re open to considering younger participants as well. We’re not putting a strict age limit on involvement.
Gwyn: While a majority of the content will be geared toward adult participants (we want to ensure everyone has the communication skills and any needed accommodations to keep productions safe and productive), there’s no reason we can’t include younger creatives if there is interest and ability.
We can offer workshops based on skill level rather than age. For instance, someone who already has notebooks full of well-written stories or scripts isn’t going to be interested in a basic storytelling class, regardless of their age. We’ll strive to match people with training that fits their experience level.
What types of workshops and training will the AE-NCC offer, and will there be both in-person and online options?
Brian: Our goal is to offer whatever is most in demand. Between Gwyn and me, we can cover a lot of ground in terms of subject matter. If there’s anything we don’t have much experience with, we can probably find an expert who does. We have a lot of professional contacts in the industry, and there are many talented people in the area we can engage. I anticipate we’ll run both in-person and online sessions to accommodate everyone.
Gwyn: We plan to provide as many options as possible. While actual filming and production work will need to happen in person, I see no reason we couldn’t offer an online option for most workshops. Simply setting up a camera or webcam to broadcast a live class—with someone relaying questions or comments from remote attendees—would make our offerings even more accessible.
This approach also lets creatives “get a feel” for our group and how our workshops run before they have to commit to being physically in a room with people they don’t know.
We’ve already discussed a wide range of potential workshop topics, including acting (and the business of acting); writing (fiction, narratives, plays, screenplays, short stories—covering character development and story structure); camera operation; directing; producing; editing; basic filmmaking for short projects; music production; video game design and development; voice-over and dubbing; and podcasting.
We also intend to offer online resources like reading guides, practice exercises, and links to reputable industry organizations for further learning.
Where will physical classes take place? Will online sessions be via Zoom?
Brian: Personally, I prefer in-person sessions, but I’m fine with either format. We’ll likely do a mix of both, depending on interest.
Gwyn: It is much, much easier to gauge understanding and encourage participation in person—especially for hands-on exercises, like learning how to use filming equipment or doing improvisation exercises.
We’re looking at options for in-person meeting space; for example, community rooms (such as the one at Stephen’s Place in Vancouver) or local libraries that have public use rooms available for nonprofits. That said, even when we hold in-person gatherings, we plan to have a virtual component available. Streaming the in-person class online or having a hybrid model will let people participate in whatever way is most comfortable and accessible for them.
The program covers many creative disciplines—filmmaking, acting, screenwriting, podcasting, music, video games, etc. How do you plan to balance these different fields?
Brian: I think it will really depend on what people want most. We’ll be listening to our participants and prioritizing the areas that generate the most interest.
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Gwyn: Many of the core skills needed for each creative path are shared across multiple disciplines. Basic storytelling principles and “rules” carry over whether you’re writing song lyrics, scripts, or video game storylines. The fundamentals of using a camera and framing a shot apply to both filmmaking and video game design.
We plan to start with broad, foundational concepts that give everyone a strong base to build on, and then branch into more advanced, specialized knowledge as we go. The exact balance will evolve once we know where participants’ interests lie and what skill levels they’re coming in with.
How will AE-NCC help neurodivergent individuals gain real-world experience, build portfolios, and network within the entertainment industry?
Gwyn: As I see it, our job is to provide foundational skills and encouragement—and hopefully bring in even more industry professionals to guide our creatives. That foundation is so important, and the best way for most people to learn is to actually get in there and do it
By pulling together the equipment and people we need, we can offer plenty of hands-on experiences in all areas of entertainment. We’ll need storytellers, performers, camera operators, lighting techs, sound engineers, editors, and more for our projects. Every short film or creative piece we finish and publish (for example, on YouTube or social media) can be added to a participant’s resume. Real project experience like that is invaluable.
Brian: I would add that Autism Empowerment already has some film production equipment we can loan out—things like a camera, lights, a sound recorder, microphones, a clapperboard, etc.
This gear was purchased with a grant from the Vancouver Cultural Arts and Heritage Commission and was used to produce the Hold My Beer short film. After we finished that project, we wanted the equipment to be available to aspiring neurodivergent filmmakers in the community. I’m glad the Creators Collective gives us a way to find people who can take advantage of this offer. None of the equipment is especially fancy, but it’s definitely enough to get the job done for basic projects.
Will there be opportunities for participants to gain paid work, internships, or future collaborations through this program?
Brian: That’s certainly one of our long-term goals. My punk rock band turned multimedia production company, Second Player Score, has adopted a mission of providing career
opportunities in the entertainment industry to people in the autism and neurodivergent community—not only by having them work on our in-house projects, but also by supporting their own personal creative visions.
Our hope is that the Collective will eventually help produce qualified and motivated individuals who want to take advantage of those kinds of opportunities, whether through Second Player Score or other avenues.
Gwyn: The skills we focus on within the Neurodivergent Creators Collective will absolutely prepare our members for working in the professional industry, and everything we do is about collaboration. I believe that once you become a member of our Collective, you will always be a member.
I’m honestly looking forward to the day I can step back and watch our members teaching skills that we initially taught them! The more we share, the more we all can grow and succeed—together.
Editor’s Note: We also hope to provide contract and internship opportunities for creators with Autism Empowerment, Spectrum Life Magazine and other projects and programs.
Will there be mentorship opportunities from experienced professionals in these fields?
Gwyn: I hope so! We will definitely need to find additional supporters as the program grows. I have a few contacts in mind that we might be able to bring in for special workshops, and some of those could turn into mentorship opportunities.
Brian: I do as well. I think people will be excited about the opportunity to contribute as guest instructors or mentors.
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Photo courtesy of Gwyn LaRee
It’s a chance for established professionals to help nurture new talent, which can be very rewarding.
In what ways is it beneficial for neurodivergent creators to be taught by other neurodivergent professionals?
Gwyn: There’s a level of connection and understanding that neurodivergent instructors can bring, along with a willingness to adapt teaching methods to what works best for each individual creative. That leads to some really impressive and dramatic gains in learning.
I recall that one of the Disney studios has started referring to what we’d call “accommodations” not as accommodations, but as “efficiency actions”—in other words, sensible steps to help everyone work better. Neurodivergent professionals are not going to mind if a creative student is, say, stimming or bouncing a knee during a session. We get it, and we’re usually more than happy to adjust the environment so everyone can learn comfortably.
Are there any costs associated with participating in the AE-NCC? Will this be a free program, donation-based, or will there be structured pricing for workshops?
Brian: We’re still in the planning stages but we are hoping to offer the program for free to participants, supported by community donations and sponsorships. There will be expenses to put the program on but our goal is for it to be as accessible as possible.
Gwyn: This is a tough one. Of course, funding really helps, but I think it’s more important to share knowledge and experience with our creatives than to try to make money from the program. I know there are arts grants—specifically here in Washington—that might help cover expenses, but we’ll explore those as we grow.
Honestly, I’m not too familiar with that side of things. For now, our intent is to keep participant costs low (or none at all) and seek community support to fund the Collective.
What kinds of volunteers do you hope to involve in this program? For example, are you looking for instructors, industry professionals, mentors, sponsors, or others?
Gwyn: Anyone and everyone with experience in any facet of the entertainment industry! We’d love help from professional actors, filmmakers, writers, sound engineers, editors, you name it—even if someone can only contribute for a single session or project.
Entertainment is truly a team sport. We will need drivers, folks to help set up equipment, people to keep our cast and crew supplied with food and water, maybe even access to locations or props. If you’re not sure how you can contribute but want to help, please reach out to us. I bet we can find a role for you, and any help will be deeply appreciated.
If you could create a wish list of ways that funders, businesses, industry professionals, and community members could support AE-NCC, what would be on it?
Gwyn: While money is always helpful, there are so many other ways to show support for this collective. As I mentioned, we will always welcome volunteers to help with productions. We will also need locations to film, donations of food and drinks for our cast and crew during longer shoots, and—very importantly—help spreading the word
When we share our productions on social media, every repost or recommendation can help our talented members get recognized within the industry and beyond. Essentially, our wish list includes community engagement at all levels:
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Photo courtesy of Brian Tashima
Photo courtesy of Gwyn LaRee
funding if possible, resources like spaces and equipment, and lots of moral support and publicity. Every bit counts.
How can community members get involved—whether as participants, mentors, donors, or supporters?
Brian: They can contact me directly at brian@autismempowerment.org or reach out to Gwyn at Gwyn@GwynLaRee.com We’re happy to hear from anyone who’s interested.
Gwyn: Please attend our initial informational and organizational meetings! Brian and I need to hear from you as we start planning the best ways to share the knowledge and experience we have.
This Collective will be guided by its members and by all those who love and support them. Also, if you see us at any Autism Empowerment events, please don’t hesitate to come up and say “hi”—we’d love to meet you.
What’s the best way for people to stay updated on the AE-NCC progress and future opportunities?
Brian: In the beginning, the easiest way is probably through the new webpage we’ve set up for the group: www.AutismEmpowerment.org/aencc
If you’re on social media, we’ve also set up a private Facebook group for the Neurodivergent Creators Collective, and that is a great way to get updates and connect with us and other members. www.facebook.com/groups/aencc
Gwyn: Definitely keep following our progress here in Spectrum Life. You can also check the Autism Empowerment website at www.AutismEmpowerment.org and Spectrum Life website at www.SpectrumLife.org for announcements and follow Autism Empowerment on social media for news. We’ll be sharing updates and opportunities as the program grows.
Is there anything else you’d like Spectrum Life Magazine readers to know?
Gwyn: I mentioned the importance of teamwork a bit earlier. Learning how to work in a team is one of the most important skills any military member learns—and ironically, when they leave the military, it’s one of the hardest things to find in the civilian world.
Film and television productions are also very much team efforts. The best productions (the ones you will cherish in your heart forever) happen when everyone is focused on working together to achieve the very best result they can.
There is no feeling I have ever found that matches that experience. That and supporter of the Neurodivergent Creators Collective to experience.
A
Call to Action: Join the Collective!
Autism Empowerment’s Neurodivergent Creators Collective is more than just a training program—it’s a movement that empowers neurodivergent voices and fosters a new era of inclusive storytelling. Whether you’re an aspiring filmmaker, a writer looking for an outlet, an artist interested in digital design, or simply someone who wants to be part of a supportive and creative community, AE-NCC welcomes you.
3 Let your voice be heard! Fill out our no-obligation interest survey to share what excites you and how you’d like to be involved. Your input helps shape the AE’s Neurodivergent Creators Collective! https://bit.ly/aenccsurvey
Inside PSU’s Autism and Social Communication Lab
Participatory Research: Centering Autistic Voices
By Karen Krejcha
For autistic youth and adults, navigating social communication, friendships, and burnout can be complex experiences. At Portland State University’s (PSU) Autism and Social Communication Lab, researchers are working directly with autistic people to better understand these areas and develop meaningful resources and supports.
Dr. Amy Donaldson, a Professor in the Department of Speech & Hearing Sciences at PSU and Editor-in-Chief of the American Journal of Speech-Language Pathology, directs the lab with three other lead researchers: endever* corbin, Brandon Eddy, and Dr. Alyssa Zisk. Their participatory research framework ensures that autistic voices are central to all of the lab’s work.
One of the lab’s current studies focuses on meltdown and burnout in autistic teenagers, aiming to provide insight into how these experiences impact teens and how better support can be offered.
The lab has also conducted research on the education, training, and attitudes of school-based professionals related to Augmentative and Alternative Communication (AAC) use for autistic children, the experiences of AAC users who also use speech, and how to assess the internal speech experiences of autistic adults.
Spectrum Life Magazine connected with Dr. Donaldson and the research team to discuss the lab’s mission, research, and how autistic people and families can engage with their work.
Hi Amy! Thank you for taking the time to connect. To start, can you share a bit about yourself and the mission of PSU’s Autism and Social Communication Lab?
Thank you, Karen! Our lab’s mission is to better understand the experiences of the autistic and AAC communities, particularly related to communication and social interaction, and to promote communication choice, access, and agency
for all people. Through a participatory research framework, we partner with autistic people and AAC users to ensure that our research directly benefits those communities.
A big part of our work is dismantling misconceptions about autistic communication and promoting a broader understanding of how different people express themselves. Whether someone communicates through AAC, sign language, speech, or some combination of these modalities, we believe that all forms of communication are equally valid. No one modality of communication is superior. Our team is committed to amplifying the messages of the autistic and AAC communities and making sure our research is not conducted at or to these communities, but rather in full partnership through every step of the research process.
I’ve been passionate about communication access for decades. I earned my master’s degree in Speech-Language Pathology from Gallaudet University, the world’s only university designed for Deaf and Hard of Hearing (HOH) students. Studying at Gallaudet was transformative—I was immersed in an environment that valued cultural identity, language accessibility, and the right to self-expression. I learned firsthand how communication is a basic human right and how communication advocacy is paramount.
After years of clinical practice and completing my doctorate at the University of Washington, I transitioned to PSU in Winter 2009, where I founded the Autism and Social Communication Lab. The lab has evolved over time and I’m pleased that our more recent aims to create a space where autistic people, AAC users, and researchers work collaboratively to study communication in a way that is both respectful and impactful has found a great deal of support. The lab has grown significantly over the years, and I am incredibly proud of the work we have done to challenge traditional models of autism research.
As a participatory research lab, our work is different from traditional research labs—autistic voices are at the center, not just participants in a study but active partners in research design, data interpretation, and knowledgesharing. This approach ensures that our work reflects the lived experiences of the communities most impacted and invested in the studies and leads to research findings that can truly make a difference.
That’s why I am so honored to work alongside our incredible research team, each of whom brings a unique perspective and passion for advancing communication access.
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Meet the Research Team
The Autism and Social Communication Lab at PSU is led by four core researchers:
• Dr. Amy Donaldson (she/her) – A speech-language pathologist with nearly 30 years of experience partnering with autistic people, families, and professionals. She specializes in supporting autistic people with diverse communication needs, particularly those who may be emerging communicators or are first developing communication and social interaction skills. Her research aims to reframe how professionals often view autistic communication and their approach to supporting autistic communicators.
• endever* corbin (they/them) – A multiply disabled, semispeaking autistic self-advocate who works both formally and informally to advance access to AAC for everyone, regardless of perceived speaking ability.
• Dr. Alyssa Hillary Zisk (they/them) – An Autistic researcher, AAC user, and advocate who currently serves as the AAC Research Team Lead at AssistiveWare. Their work focuses on the lived experiences of AAC users, particularly in relation to internal speech and self-advocacy.
• Brandon Eddy, M.A., CCC-SLP (he/him) – An Associate Clinical Professor in the Department of Speech & Hearing Sciences at PSU specializing in AAC, cleft and craniofacial disorders, and speech sound disorders. He brings extensive experience working with individuals who use AAC and is passionate about breaking down barriers in communication access.
Please tell us more about the Autism & Social Communication Lab that you founded.
Our lab is housed in the Department of Speech & Hearing Sciences at PSU. While we have a physical space for data collection and team collaboration, much of our work is
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conducted remotely. This allows for participation from a geographically diverse team, including autistic researchers and AAC users who may prefer virtual collaboration.
One of the things that makes our lab unique is our commitment to accessibility in research. We ensure that meetings are conducted in a way that supports multiple forms of communication, including AAC, speech, ASL, chat, and text-based formats. We also recognize that participation looks different for everyone, and we aim to create an environment where all team members feel comfortable contributing in ways that work best for them.
What are the qualifications to work in the lab?
Curiosity, motivation, and an interest in our lab’s mission and vision are the main priorities for joining the lab. In our mission to examine and promote communication choice, access, and agency, we are interested in contexts that affect communication and social interaction, the ways in which communication and social interactions are perceived, and how relationships are impacted by communication.
We explore these topics within a neurodiversity-affirming, anti-ableist framework and, therefore, are interested in topics related to disability representation and participatory research, as well.
We do have a formal mechanism for joining the lab to ensure that the lab is the right match for folks’ interests and the lab’s aims and to ensure that lab members have the correct training in working with research participants.
Any community member, researcher, professional, or student is welcome to inquire—just the other day, a retired teacher and mother of a newly-diagnosed autistic adult reached out to join the lab. We welcome all interest!
What age and ability levels does your research study and why?
Our research spans a wide range of age groups and abilities. We have worked with autistic children as young as three years old, autistic teenagers, and autistic adults. We believe that autistic experiences across the lifespan are essential to study because communication skills and needs change over time.
For example, early childhood studies help us understand how to introduce AAC and support language development, while research with teenagers focuses on experiences related to social communication, self-advocacy, and mental health. Research with autistic adults has helped us better understand communication choices and their history of communication access.
You use a participatory research model. Can you explain what that means and share how your team incorporates autistic input?
Participatory research means conducting studies with marginalized communities rather than on them.
Historically, autism research has often been conducted without autistic involvement, leading to misunderstandings and even harm. Our lab is committed to changing that by
ensuring autistic individuals and AAC users are partners in all aspects of our research.
In participatory research, autistic people contribute at every level—from shaping research questions to analyzing data and sharing findings. This approach fosters collaboration, empowers communities, and leads to studies that more accurately reflect autistic perspectives and needs. It also helps address the historical power imbalance in research and centers lived experience as valuable expertise.
For example, when studying AAC use among autistic adults, we fully partnered with autistic AAC users to design and implement the research. This community helped us understand which questions mattered most and ensured that our findings were presented in ways that were useful to the community. This collaborative process is central to our mission and strengthens the impact of our work.
Our research team includes autistic researchers, self-advocates, and AAC users who participate in the design, execution, and dissemination of studies. We make sure that autistic voices are not just included but prioritized at every step.
We actively seek feedback from the autistic community and adjust our research based on their insights. Additionally, we create accessible research materials, ensuring that findings are available in multiple formats, including plain language summaries, infographics, and video presentations.
Our commitment to inclusion extends beyond research— our goal is to amplify autistic voices, foster collaboration, and ensure that the research we conduct is meaningful and beneficial to the communities we aim to serve.
Your team is currently conducting a study focused on meltdowns and burnout in autistic teens. Can you share more about this research?
Yes! Many autistic teenagers experience meltdowns and burnout, but these experiences are still widely misunderstood. Our research focuses on identifying the triggers and impacts of meltdown and burnout, as well as what types of supports are most helpful for teens who experience these challenges.
We are gathering data from autistic teens and their families to understand what helps them recover from meltdown and burnout, how they communicate their needs, and how they experience support (or lack thereof) from schools, families, and peers. The insights from this study will help parents, educators, and healthcare providers implement more effective autistic-led strategies for supporting youth.
Burnout can have long-term effects on mental health, so our goal is to improve awareness and advocacy around this issue, ensuring that teens receive the support they need before they reach a state of crisis.
We are still currently in active recruitment. If you are an autistic teen between the ages of 14-17 who has experienced meltdowns and burnout, or you know of someone who is and would like to participate in a secure online study examining your experience, please contact us for more information.
The survey is anonymous, and you will need a parent or caregiver to provide consent prior to completing the survey. Please contact us at asc.psu@pdx.edu
What are some of the other research projects your team has worked on, and what projects have had the most impact?
Over the years, our lab has conducted several impactful studies that have shaped the field of autism research and speech-language pathology.
One of our most widely recognized studies (Donaldson, corbin, & McCoy, 2021) explored the experiences of autistic adults who use both speech and AAC
We found that most participants had only discovered AAC as adults, despite experiencing speech-related challenges in childhood and receiving professional services. All of the participants wished they had access to AAC earlier in life, which highlights the importance of making AAC available to all who may need it, regardless of their perceived speech skills.
The study has had a major impact in the speech, language, and hearing sciences. It has been cited in many academic papers and led to invited presentations at several conferences, such as the American Speech-LanguageHearing Association (ASHA) annual convention.
More importantly, it has been embraced by the autistic and AAC user communities, helping to validate lived experiences and push for change.
Another major project was our survey of school-based professionals (Donaldson et al., 2023; Zisk et al, 2024) on their training and attitudes regarding autism and AAC.
We found that many educators and therapists lacked the knowledge and confidence to effectively support AAC users. These findings have driven efforts to promote interdisciplinary collaboration and improve training in education and therapy settings.
Additionally, we are currently analyzing data from a study on autistic adults’ internal speech experiences. For many autistic people, their speech does not always meet their communication needs. Internal speech experiences refer to intermittent, unreliable, insufficient, and expensive speech.
These experiences can only be assessed by understanding how the autistic person feels about the act of speaking and the effectiveness of their communication using speech. We currently do not have ways to measure internal speech experiences in autism—we have been relying only on visible characteristics of speech (articulation, motor planning) to identify if someone has communication challenges using speech.
Our ultimate goal is for these studies to translate into real-world change—better policies, improved educational practices, and a greater understanding of communication diversity.
What are some future research areas you are excited about?
We are exploring several new areas of research that focus on the lived experiences of autistic people and AAC users.
We are working on a project focused on hearing autistic adults who use American Sign Language (ASL). There is very little research on this community, and we want to understand how ASL fits into their communication needs and identities.
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Additionally, we are developing early childhood interventions to normalize AAC use in schools. Many professionals still see AAC as a “last resort” rather than a valid early communication option. By integrating AAC into early education, we can help children access communication supports earlier, reducing frustration and increasing language opportunities.
All of these projects are centered on increasing understanding and breaking down barriers to effective communication.
What key takeaways from your research might be valuable for autistic individuals, families, or educators?
One of the biggest lessons from our research is that speech is not superior—all forms of communication are equally valuable and should be honored. Many autistic people benefit from multimodal communication—using AAC, gestures, ASL, speech, and other modalities.
There is still a societal bias that assumes speech is superior, but communication is about effectively conveying the full extent of one’s thoughts, feelings, and ideas in the manner that best meets the person’s needs, not limiting expression due to modality preferences or biases.
For families, educators, and professionals, we recommend:
• Respecting and encouraging all forms of communication If someone prefers typing, using an AAC device, or signing instead of speech, that should be honored.
• Providing access to AAC tools early. Waiting until a child “fails” with speech before offering AAC can delay effective communication development.
• Challenging assumptions about ability. Just because someone doesn’t speak doesn’t mean they don’t understand or have important things to say.
Ultimately, our goal is to normalize diverse communication methods and ensure that everyone has access to the tools they need to express themselves fully.
If you could see one major shift in how autistic communication and social experiences are understood, what would it be?
If I could change one thing, it would be the assumption that autistic people need to conform to neurotypical social norms to be successful.
Too often, autistic communication styles—whether that’s using AAC, scripting, stimming, or needing extra processing time—are seen as deficits instead of valid ways of interacting with the world
We need to move away from the idea that communication is only “correct” if it looks a certain way. Instead, we should embrace diversity in communication and recognize that all forms of expression are meaningful. The idea that autistic people should “mask” or suppress their natural ways of interacting leads to stress, burnout, and mental health challenges.
A true shift in understanding would mean more people recognizing, respecting, and accommodating different ways of communicating. That’s what our lab is working toward every day.
How can readers learn more or support your work?
We encourage anyone interested in our work to visit our website, where we share research updates, findings, and opportunities to get involved. Our lab is dedicated to amplifying autistic voices and ensuring that the research we conduct is meaningful, impactful, and community-driven.
https://asdchildlab.research.pdx.edu/
For those who would like to support our work, we welcome collaboration, research participation, and donations. We work closely with the PSU Foundation, which allows people to direct contributions to support our research initiatives.
Contact Dr. Amy Donaldson at adonald@pdx.edu for more information.
By working together, we can continue advancing research that is truly inclusive and empowering for the autistic community.
What else would you like Spectrum Life Magazine readers to know?
This is Amy again; I think the final note that I would add is something that I think I mention in every interview. I have been a clinical researcher for many years and I have learned much in my career—I am very appreciative.
However, I truly feel fortunate to have “found” participatory research in this past decade. The timeline and process for this framework differs from traditional research, but I have learned an extraordinary amount in a relatively short time, and I feel I learn more every day.
More importantly, as a nonautistic person who does not use AAC, it is fundamental that I fully partner with those people who are autistic and use AAC in this significant work. I am grateful for this partnership and honored to work with this team. I will never do any other kind of research.
Due to space constraints for print, an extended version of this article, including deeper insights into participatory research, additional research findings, and exclusive interview content, is available online at:
www.spectrumlife.org/blog/psuasclab
We invite you to explore the extended version and learn more about the groundbreaking work being done at PSU’s Autism and Social Communication Lab.
Empowering Autistic Students with AI Storytelling Building Skills, Confidence, and Communication.
By Aaron Blackwelder
The workforce and technology landscape is evolving at an unprecedented pace. Technological advancements are reshaping how we live and work, from self-driving taxis to 3D-printed houses and autonomous delivery robots.
Among these innovations, Generative Artificial Intelligence (AI) presents both opportunities and challenges—particularly for autistic students as they prepare to enter classrooms and workplaces transformed by AI.
While concerns about AI-driven job displacement persist, early research from the World Economic Forum suggests that AI will augment rather than replace human labor.1
For autistic individuals, this augmentation can be particularly beneficial, as AI tools can help bridge communication gaps, provide structured task support, and enhance productivity in the workplace.
This evolution in workplace expectations makes LinkedIn COO Daniel Shapero’s interview question—”Tell me a story about how you use AI in your work or home”2—especially relevant for autistic individuals.
While some autistic students may find traditional storytelling challenging, their systematic approach to technology can lead to compelling narratives about AI implementation.
By recognizing and harnessing these strengths, we can empower autistic students to articulate their AI experiences while fostering essential communication skills.
What is AI?
AI stands for artificial intelligence. It’s a type of technology that allows computers to perform tasks that would normally require human intelligence, such as understanding language, recognizing images, and summarizing content. You may already be familiar with AI tools like ChatGPT, which can assist with writing and organization, or image generators that can create art.
Leveraging Autistic Strengths in an AI-Enhanced Workplace
Many autistic individuals possess cognitive strengths that align well with AI utilization. Their pattern recognition skills and attention to detail enable them to identify optimal AI use cases, while their structured thinking supports precise interactions with AI tools. Additionally, their direct communication style can be an asset when crafting clear, concise AI prompts, and their ability to hyperfocus on specific interests often drives innovation in AI applications.
Traditional education has prioritized content knowledge, but in a world where AI can instantly provide information, employers now seek a different set of skills. To foster AI literacy and workplace readiness, educators should emphasize the “4 C’s”—Creativity, Communication, Collaboration, and Critical Thinking—while aligning instruction with autistic learning styles and preferences.
This includes:
• Critical Thinking & Problem-Solving: Encouraging a structured approach to analyzing AI outputs and decision-making.
• Collaboration & Teamwork: Providing accommodations that support effective group work, such as structured roles and clear expectations.
• Communication & Precision: Building on autistic students’ natural tendency toward clarity to develop strong workplace communication skills.
• Creativity Opportunities: Identifying ways for students to leverage their unique perspectives to guide AI applications and problem-solving efforts.
By focusing on these areas, we can help autistic students build a professional identity that capitalizes on their strengths while ensuring they are prepared for the evolving job market.
Practical Approaches for Empowering Autistic Students
When introducing AI to our children, it is important to create purpose and structure before diving in. Below are practical strategies to implement these concepts effectively.
1. Structured Interactive Learning with AI
Autistic students benefit from structured, step-by-step approaches to learning. Parents and educators should provide clear guidelines for AI interaction, supported by visual workflows that outline processes such as AI prompting and response evaluation.
Templates and structured AI exercises help students experiment with AI in a way that aligns with their need for predictability and order, allowing for exploration without ambiguity.
2. Personalized Creative Production
Creative expression varies widely among autistic students— some may prefer written communication, while others gravitate toward visual storytelling, coding, or other mediums.
The key is to break down creative tasks into manageable components while using AI tools to assist with executive functioning challenges, such as organizing ideas or
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refining content. This approach not only honors individual preferences but also ensures that students can effectively convey their unique perspectives.
3. Systematic Revision Processes
Revising work can be an abstract and overwhelming process, but autistic students often excel when revision is structured and methodical. Educators can facilitate this by:
• Developing explicit success criteria for content evaluation.
• Using AI as a revision assistant to provide clear, actionable feedback.
• Providing structured rubrics that help students assess clarity, audience needs, and content effectiveness.
4. A Customized AI Partnership Approach
Rather than viewing AI as a tool to replace effort, students should be taught how to collaborate with AI strategically. For example, a high school student working on a research paper might use an AI tool like ChatGPT to help brainstorm ideas, generate an outline, or suggest ways to refine their writing.
Meanwhile, a college student preparing for job interviews could use AI-powered tools to practice answering common questions, analyze their responses for clarity and confidence, and even receive feedback on body language through video-based AI coaching.
When introducing AI, be sure to:
• Establish clear protocols for AI use (e.g., defining when to use AI for brainstorming versus final output refinement).
• Teach students how to critically evaluate AI responses for accuracy and bias.
• Help students develop structured strategies for AI integration into workflows.
By approaching AI use as a structured partnership, students can confidently navigate the technology without feeling overwhelmed by its complexity.
5. Creating Supportive Learning Environments
The learning environment—both physical and digital—plays a crucial role in student success. Strategies for optimizing this include:
• Providing opportunities for AI interaction with clear learning objectives.
• Establishing predictable routines for AI use, helping students feel comfortable and focused.
Practical AI Tools for Autistic Students
There are hundreds of AI tools available online. It is important to select tools that help meet the needs of students, both
developmentally and academically. Here are some free or accessible AI tools that can benefit autistic students of different ages:
Elementary
• SpeechTexter (transkriptor.com): Turns your voice into text.
• Microsoft Reading Coach (coach.microsoft.com): Helps students build reading skills with personalized stories and voice-based feedback.
• Khan Academy’s AI-powered tutor (www.khanmigo.ai/): Assists with math, science, and humanities.
Middle/High School
• Grammarly (grammarly.com): Provides feedback on your writing and helps you improve your grammar, spelling, and style.
• Diffit (diffit.me): Creates and modifies texts at different reading levels.
• Notion AI (notion.com): A digital organization system.
• MagicSchool (magicschool.ai): Create on-demand resources and activities, personalize learning, and differentiate instruction.
College and Beyond
• ChatGPT (chat.openai.com): Brainstorm ideas, write different creative text formats, and translate languages.
• Perplexity AI (perplexity.ai): A search engine that provides answers to complex questions.
• GitHub Copilot (github.com): An AI pair programmer that offers code suggestions in real-time directly from your editor.
Conclusion
As AI reshapes the workplace, the need for diverse perspectives and approaches to AI integration has never been greater. Autistic individuals bring valuable strengths to this evolving landscape—precise thinking, pattern recognition, and systematic problem-solving—that can enhance AI-driven workflows.
The goal is not to change how autistic students think or communicate but to empower them to articulate their AI experiences in ways that highlight their capabilities.
By equipping autistic students with the skills, strategies, and confidence to navigate an AI-enhanced world, we are not just preparing them for the workforce—we are fostering a more inclusive, innovative future for everyone.
References:
1. World Economic Forum. How AI is Changing the Future of Work https://bit.ly/aichangewef
2. Quidwai, Sabba. Leadership, AI, and Technology https://bit.ly/sabbaquidwai
Aaron Blackwelder is a middle school English teacher in the Vancouver Public School District and coaches high school golf in Southwest Washington. He is the co-founder of Teachers Going Gradeless, and an educational contributor to Spectrum Life Magazine. Aaron has been a Washington State English Teachers Fellow, was nominated for Washington State Teacher of the Year in 2019, and is a five-time golf coach of the year. Aaron is a husband and father of two boys on the autism spectrum, who inspire him to become a teacher who meets the needs of all students. Visit www.TeachersGoingGradeless.com
Autism, Disability, and Aging Resources
In each issue, Spectrum Life editor Karen Krejcha answers frequently asked questions about autism-related topics in our community.
Dear Spectrum Life,
Ask Spectrum Life
Autism
Resources
for our Community
I’m searching for resources to support an older family member who is autistic. It has been difficult to find information about autism and aging, and I want to understand what services, supports, and communities are available for older adults on the spectrum, especially those with additional health challenges. Can you help? Sincerely, Mary in Milwaukie
Dear Mary,
You’re not alone in asking this question. The topic of autism, disability, and aging has historically been underrepresented in research and public awareness. While there is a growing focus on early childhood intervention, many autistic and neurodivergent adults, including those diagnosed later in life and those with intellectual and developmental disabilities (I/DD), find themselves navigating unique challenges as they age.
Starting in our Summer 2025 issue, Spectrum Life Magazine will launch an Autism, Disability, and Aging series to highlight critical topics, including health, housing, and long-term planning for autistic and neurodivergent adults, including people with I/DD.
Our first feature will focus on Autism, Disability, and Parkinson’s disease. Throughout this series, we aim to amplify the voices of older autistic and neurodivergent people, provide valuable resources, and advocate for improved services.
We also want to hear from you—your stories, your questions, and your lived experiences—so that we can ensure this series truly reflects the needs of our community.
Aging as an autistic or neurodivergent person can bring specific concerns related to sensory processing, health conditions, social isolation, and access to appropriate support services. Many older autistic adults experience co-occurring health conditions such as gastrointestinal disorders, chronic pain, cardiovascular issues, and autoimmune conditions.
Many people, including those with I/DD, such as Down syndrome, are at a higher risk for early-onset dementia and other significant health concerns, making it essential to develop specialized aging support systems. Additionally, challenges with executive functioning, transitions, and healthcare accessibility can impact overall quality of life.
Aging individuals are also at greater risk of financial exploitation and scams. Neurodivergent adults who rely on caregivers or have limited financial literacy may be more vulnerable to predatory tactics.
It is crucial that we, as a community, work to ensure older neurodivergent adults receive the respect, care, and
accommodations they need to age with dignity and live fulfilling lives.
We will be expanding these resources further as we work together with our community to learn more. In the meantime, here are some areas of support we hope are helpful.
Autism, Disability, and Aging: Where to Start
1. Community and Peer Support
Finding others who share similar experiences can be incredibly validating. Many older autistic and neurodivergent adults find comfort and connection in peer-led communities, both online and in person. Here are a few places to start:
• Autistic Self Advocacy Network (ASAN) – Provides resources related to aging and disability rights.
https://autisticadvocacy.org
• The Arc’s National Council of Self Advocates – A nationwide network of individuals with I/DD advocating for disability rights and peer support.
https://thearc.org/get-involved/self-advocacy
• NeuroClastic – An autistic-led platform with articles and personal narratives on aging and late-diagnosed autism. https://neuroclastic.com
• Wrong Planet Forums – A discussion forum where autistic adults of all ages share their experiences on different topics. https://wrongplanet.net
• Local I/DD and Autism Social Groups – Many local organizations, such as Autism Society and The Arc chapters, offer support groups for autistic and neurodivergent adults, including those with I/DD.
• Autism Society of Oregon’s “Happy Hour” for Autistic Adults 40+ – info@AutismSocietyOregon.org.
2. Aging and Health: Understanding Medical Needs
Many autistic and neurodivergent adults have co-occurring health conditions. Individuals with Down syndrome, for example, face a significantly higher risk of early-onset
Alzheimer’s disease. Understanding these health concerns and finding healthcare providers who respect neurodivergent needs is crucial.
• Autism and Parkinson’s Disease – Emerging research suggests a potential link between autism and Parkinson’s-like symptoms.
• Parkinson’s Foundation – A national resource offering education and support for Parkinson’s patients. – https://www.parkinson.org
• Parkinson’s Resources of Oregon – Offers regional resources for those navigating Parkinson’s disease. https://www.parkinsonsresources.org
• Autism and Dementia – Cognitive aging in autistic individuals is still being studied, but resources like the Alzheimer’s Association may provide general caregiving support for those experiencing memory challenges. – https://www.alz.org
• National Task Group on Intellectual Disabilities and Dementia Practices – Provides guidance on aging and dementia for individuals with I/DD. – the-ntg.org
3. Housing and Independent Living Support
As individuals age, finding appropriate housing becomes a major consideration. Some older autistic adults live independently, while others require varying levels of support.
• The Arc’s Center for Future Planning – Provides guidance on long-term housing and support planning. https://futureplanning.thearc.org
• Autism Housing Network – A collection of housing resources for autistic and neurodivergent adults. www.autismhousingnetwork.org
• State and Local Developmental Disabilities Services –Many states offer home and community-based services (HCBS) for autistic and neurodivergent adults. Check with local agencies such as:
• Aging and Disability in Southwest Washington www.helpingelders.org
4. Financial and Legal Planning
Planning for the future is essential. Many autistic and neurodivergent adults with I/DD need guidance on Social Security, Medicaid, and long-term planning.
• National Disability Rights Network (NDRN) – Offers guidance on disability rights, legal protections, and advocacy. www.ndrn.org
• Administration for Community Living (ACL) – Advancing independence and inclusion of older adults and people with disabilities. – https://acl.gov
• ABLE National Resource Center – ABLE accounts are a tax-advantaged savings plan for disabled individuals, including autistic adults. – www.ablenrc.org
5. Advocacy, Research, and Disability Rights
While much more research is needed on autism and aging, there are some emerging studies and advocacy efforts in this area.
• AASPIRE (Academic Autism Spectrum Partnership in Research & Education) – Conducts studies on the health and well-being of autistic adults, including aging-related topics. www.aaspire.org
• Autism in Adulthood Journal – A peer-reviewed research journal focused on autistic adult experiences, including agingrelated topics. – www.liebertpub.com/aut/autism-in-adulthood
• Disability Rights Education & Defense Fund (DREDF) –A national civil rights law and policy center dedicated to advancing the rights of disabled people, including aging and healthcare advocacy. – www.dredf.org
• Nancy Lurie Marks Family Foundation: Aging Well With Autism https://www.nlmfoundation.org/aging-well-with-autism
• Sins Invalid – A disability justice-based performance project that centers disabled people of color and LGBTQIA+ individuals, advocating for inclusive policies and intersectional aging support. – https://sinsinvalid.org
Final Thoughts
Your loved one is part of a growing population of older neurodivergent adults who deserve understanding, connection, and support. While systemic gaps still exist, there is increasing recognition of the need for age-inclusive autism and disability services. The more we advocate, educate, and build community, the stronger the foundation for future generations.
Aging when you are neurodivergent presents unique challenges, but it is also an opportunity to honor the resilience, wisdom, and contributions of existing people with disabilities who have shaped our community. At Autism Empowerment and Spectrum Life Magazine, we believe that every person deserves to age with dignity, respect, and access to the support they need.
In a time when resources for seniors and disabled individuals face uncertainty, it is more important than ever to advocate for inclusion, accessibility, and justice. All older adults, regardless of disability, should be able to live with security and belonging in their communities. We stand firm in our commitment to ensuring that autistic individuals of all ages are valued, supported, and empowered.
To those navigating aging as an autistic or neurodivergent individual, or to the loved ones supporting them: You are not alone. We see you. We hear you. And we are here to walk this journey alongside you.
With Acceptance, Enrichment, Inspiration, and Empowerment,
By John Krejcha
to I/DD Health Care
The OODH Linkage Project
People with intellectual and developmental disabilities (I/DD), including autism, often face more health problems than the general population. These include higher rates of chronic conditions, mental health challenges, and even a shorter life expectancy.
Many of these health problems happen because it can be hard to get the right care. Doctors and dentists may not understand individual needs, and there are currently not enough practitioners who know how to effectively help. Sensory challenges, communication barriers, and long wait times for appointments make it even harder to stay healthy.
In September 2023, the National Institutes of Health (NIH) officially recognized people with disabilities as a group that faces health disparities. The U.S. Health and Human Services (HHS) Secretary Xavier Becerra said, “Access to quality health care is a basic human right. It is unacceptable that in 2023, every person in the United States of America does not have that access.” It is unacceptable in 2025 as well.
One organization working to make a difference is the Oregon Office on Disability and Health (OODH). Since 1994, OODH has been working to remove barriers and improve health care access for people with disabilities. One of their key programs is the Linkage Project, which helps connect Oregon adults with I/DD to health care and health promotion programs in their community. To learn more, we spoke with the Linkage Project Team at OODH.
What is the Oregon Office on Disability and Health (OODH)?
OODH is a public health program under the Institute on Development and Disability at Oregon Health & Science University (OHSU). OODH has been funded since 1994 by the Centers for Disease Control and Prevention (CDC) as a Disability and Health State Program. We receive additional funding through grants and contracts from other national and state partners that help us fulfill our mission.
Our mission is to promote health equity and well-being of people with disabilities. We collaborate with disability communities, public health entities, health care systems, and community-based organizations to prioritize access and equity throughout Oregon.
What are the core values that drive OODH’s mission?
Our work is guided by the following values: health equity, accessibility and inclusion, diversity, anti-racism, community partnership, and learning.
We envision a future that is accessible, welcoming, and inclusive of all people with disabilities in Oregon. This vision extends beyond the individuals and their families to benefit entire communities.
What is the Linkage Project, and how does it aim to help?
The Linkage Project connects Oregon adults with intellectual and/or developmental disabilities (I/DD) with unmet needs to preventive health care and health promotion programs in their community. Our Linkage Project Team works with participants in English and Spanish.
Participants work with a Linkage Specialist over a three-month period to:
• Receive individualized referrals to preventive health care services and programs
• Learn about preventive health care and self-advocacy
• Find self-advocacy tools to address unmet health needs
Besides helping individuals with their own health goals, the project aims to learn what works well and what doesn’t work well for people within the I/DD community.
This understanding allows OODH and our community partners to advocate for the Oregon health care system to include things that work well for many people, like using preparation tools for appointments, and get rid of or improve the things that don’t work well for many people, including barriers to accessible care.
Who is eligible for the Linkage Project, and how can someone join?
To be eligible for the Linkage Project, an individual must be 18 years of age or older, live in Oregon, identify as having I/DD, and be interested in working with us on a preventive health goal of their choosing. Participants meet with Linkage Specialists on the phone or via Zoom video meetings in English or Spanish.
The Linkage Project is accepting enrollment from individuals, Office of Developmental Disabilities Services (ODDS) case managers, community partners, families, and other supports.
Our website has a comprehensive overview of the Linkage Project and anyone who is interested can complete our online sign-up form or contact us. The Linkage Project Team looks at your form and will contact you with any questions.
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If the project seems like a good fit for everyone, the Linkage Project Team will set up a first meeting. A Linkage Specialist will explain the project and answer your questions during this first meeting.
What are the biggest barriers people with disabilities face in accessing health care?
The biggest barriers we have seen for people with disabilities are access to care and the availability of disability-competent health practitioners to support access.
Many people with I/DD struggle to access health care due to:
• Lack of knowledgeable practitioners: Many doctors and dentists are unfamiliar with I/DD and don’t have the training to accommodate different needs.
• Lack of access, long wait times and practitioner shortages: Finding a nearby doctor who accepts new patients, understands I/DD, and takes insurance can be difficult.
• Past negative experiences: Some individuals have had bad experiences with health care practitioners, making them anxious about seeking care, even when badly needed.
• Sensory and communication challenges: Medical environments can be overwhelming, and the process is especially challenging for participants who are unable to communicate verbally with words or who have unique behavioral or sensory support needs.
How does the Linkage Project help address these challenges?
The Linkage Project Team works with participants to remove barriers to preventive care they are experiencing and support them in self-advocacy skill building. The Linkage Project Team creates goals with individuals in the following areas:
• Routine primary care and follow-up appointments
• Vision and hearing checks
• Diabetes and colon cancer screening
• Breast cancer screening
• Pap tests (cervical cancer screening)
• Bone density screening
• Vaccines and immunizations
• Dentistry and oral health care
• Care for anxiety, depression, or other mental health support
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Photo courtesy of: The Linkage Project at OODH
• Tobacco cessation
• Services for alcohol or drug misuse
• Accessible spaces or opportunities for physical activity and outdoor recreation
• Health education and health promotion
We also come up with ways to work on the challenges, including creating improved clinic tools and meeting with policymakers.
Are there any limitations to what the Linkage Project can do?
The Linkage Project is not set up to address emergency or urgent support needs. We cannot assist with insurance coverage issues or specialty health care, but we can connect individuals to their insurance or Coordinated Care Organizations (CCOs) as appropriate.
In-person meetings or meetings in languages other than English or Spanish are also something we cannot do at this time. While we work hard to find timely services and supports, we are unable to get around current systems issues, such as waitlists or health practitioner shortages.
What steps does OODH take to ensure that the disability community has a voice in shaping its work?
Our OODH staff all have a connection to the disability community, either through personal or family lived experiences or through professional experiences.
OODH is privileged to work as partners with a variety of community members and organizations.
Our Advisory Council (AC) provides direction and guidance for our work. The AC includes individuals with lived disability experience, public health professionals, and community advocates. The Oregon Self Advocacy Coalition (OSAC) and their Health Care Committee advise OODH on various projects. We also make use of surveys, calls for feedback, and tailored collaborative opportunities to capture disability community needs and opinions.
Another reason it is important to OODH to build partnerships with the disability community is so that we can support the great work others are doing. We want to offer our disability health expertise and support whenever possible to projects that other organizations and individuals are pursuing.
What are some of the health promotion tools and resources that OODH provides?
OODH creates and disseminates a variety of programs, trainings, and resources focusing on health promotion for people with disabilities. Through these materials, we hope to increase the health, wellness, advocacy, and engagement people feel in their communities.
Some of our offerings include:
• Taking Charge of My Health Care Toolkit – A toolkit of resources and videos designed to provide health care and self-advocacy education for people with I/DD and those who support them.
• Resource Navigation Guides – Information on accessible and inclusive health services for people with I/DD and other disabilities in Oregon communities.
• Training for health care professionals – Online trainings on providing accessible care for individuals with disabilities.
We are excited to offer health care professionals the opportunity to engage in virtual, on-demand trainings on providing care to people with disabilities. One training focuses on Providing Health Care and Screenings for people with disabilities, while the other focuses on Accessible and Adaptive Communication
We also have a training webinar for mental health professionals on offering accessible health care to individuals with I/DD. Two autistic individuals were involved in the creation of the webinar, and we took care to highlight access issues relevant to autistic and neurodivergent communities in the training.
What challenges has OODH faced in providing these services?
Grant funding is uncertain, and CDC priorities for Disability and Health State Programs like ours change every five years. This means that it can be hard to sustain all our programs.
Recruitment of participants is always a challenge. This includes participants with disabilities to participate in health programs and health care practitioners to participate in practitioner trainings.
Another challenge is that we focus on preventive health issues. People believe that prevention is important, but many people have more acute issues and demands that make focusing on health and wellness difficult.
Do you have any success stories from the Linkage Project that you can share?
Yes! Over the last three years, the Linkage Project has had the privilege of helping 50 participants from eight Oregon counties, leading to 93 referrals for preventive health care, mental health, and wellness programs. Some participants have successfully:
• Found a primary care practitioner (PCP) for the first time.
• Scheduled mental health and dental appointments.
• Used individualized self-advocacy tools to improve their care.
One participant shared, “I learned a lot about mental health and life... like it is important to go to the dentist and doctor.” Participants feel empowered to set and achieve additional health goals after their first success.
Supporters have shared that they observed a momentum built that allowed more interest in addressing other preventive care goals. For example, one participant’s Linkage goal was finding a consistent PCP. The participant attended their PCP appointment and was able to get a mental health referral, and then shortly thereafter decided to schedule a dental cleaning.
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Breaking Barriers to I/DD Health Care, continued from page 48
Our website has a few success stories about using the Taking Charge of My Health Care Toolkit to support self-advocacy in goal setting and mental health rapport building.
How can people learn more about OODH and the Linkage Project?
Is there anything else you’d like Spectrum Life Magazine readers to know?
OODH has other resources that neurodivergent and autistic communities might be interested in, and we encourage people to view our website as well as follow us on social media.
Our office partners with advocates from disability communities. If you are interested in participating with our office on an advisory committee, reviewing tools that we create, being a part of one of our programs, or sharing about your own disability projects, please contact us!
“Caring” John Krejcha is co-founder of Autism Empowerment and serves as Program Director. He serves on the Editorial Advisory Board of Spectrum Life Magazine and is co-host of the Autism Empowerment Podcast
John is married to co-founder Karen Krejcha and is the father of two amazing children and their feisty cat, Zula. While John is the only one in the family who is not on the autism spectrum, he is dyslexic and identifies as a neurodivergent and loving ally
Autism and Grief: Processing Loss Differently Navigating Loss in Teens and Adults
By Dr. Anson Service, Psy.D., LMHC, aka Neurodivergent Doctor
I received a phone call one evening that shook our family to the core. My 17-year-old son’s best friend had suddenly died. I called my three sons into the living room to tell them the sad news. As they filed in, my oldest son asked, “Okay, who died?” It seems the last couple of times I asked them to all come into the living room, it was to tell them someone close to us had died.
I am not sure what I expected their reactions to be, but I was somewhat surprised by my 17-year-old’s. He had no reaction, no tears, no breakdown, just... nothing. He stood there with a flat expression and shook his head up and down as he looked down and around the room at nothing in particular.
When I asked my sons how they felt about it, my oldest son didn’t really have much to say, and our second son said he was shocked. Our youngest cuddled on the couch with us as we cried. To the outside world, it would look like our oldest son, the one who we thought would be most hurt by this, didn’t care. But inside, it was a different story.
We understand that Autism is a neurodevelopmental condition that affects communication, social interaction, and sensory processing. These differences often lead to unique, often misunderstood ways of thinking and experiencing the world. I sometimes liken it to a computer with a different operating system—think Linux in a world full of Windows.
When it comes to grief, autistic teens and adults may process and express themselves in ways that neurotypical folks might not expect or recognize. But just because it doesn’t look the way most think it should, it doesn’t mean it’s not there.
Understanding Grief in Autism
Grief is a universal experience, but for autistic people, it can come with some additional complications. They often experience grief more intensely than neurotypical folks but don’t always show it in expected ways (Arcari Mair et al., 2024). Research also indicates that many autistic individuals often experience emotions intensely but may struggle to identify, articulate, or regulate these feelings (NeuroLaunch, 2024).
When talking with autistic individuals about empathy, I am clear to point out that a common misconception is that autistic individuals lack empathy. I have found that we do feel a great deal of empathy; however, we may process emotions differently, and thus, show it in ways that others may not recognize as empathy.
Autistic adults may grieve just as deeply as anyone else but might not follow the traditional “mourning script” (Doka, 2023). Some cry, some don’t, some delve into an interest, some hyperfocus on obscure historical events, and some may shut down or melt down to cope.
Some may not see a point in grieving if the loss makes logical sense to them—such as the death of a well-aged pet with a
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long history of health complications. The pet’s death would be considered an “on-time” death, and depending on their interpretation, the person may feel like it is simply the next step in the stages of life and death.
However, many autistic people experiencing grief may be more like a duck who appears calmly gliding on the surface but is fiercely paddling underneath the water to cope with the tragedy.
Sadly, many autistic individuals are frequently excluded from immediate news about the death of a loved one, and are not invited to be part of the discussion about death and loss because people assume they won’t understand (Srinivasan, 2024).
Just because grief isn’t outwardly visible or recognizable as such doesn’t mean it’s not there. My son’s way of processing loss was internal, quiet, and entirely valid (Autism & Grief Project, n.d.).
Grieving More Than Death
While we often think of grief as something tied to death, autistic individuals can grieve intensely over a wide range of other subjects as well, like a favorite routine, a discontinued soda pop, or a canceled show.
I shed tears when Schitt’s Creek ended and felt a moderate amount of grief when Breaking Bad ended. I also wish I could use a time machine to go back to 1965 and talk some sense into the creators of the Andy Griffith Show for allowing Don Knotts to leave the show after the fifth season.
It’s funny how this is the first thing I think of doing with a time machine instead of trying to stop the shooter on the grassy knoll or buying thousands of Bitcoin when they cost just pennies.
For many autistic people, consistency and predictability provide a sense of security and safety. Disruptions to daily routines—such as losing a job, ending a relationship, closing a business, or experiencing major life transitions like moving, changing schools, or parental divorce—can trigger grief that feels just as intense as mourning a loved one. (Milton, 2023).
I have spoken to many autistic individuals who experience more grief over the loss of their dog or cat than a human family member for various reasons. Because society tends to downplay these types of losses, autistic people may not get the same support they would if they were grieving in what society perceives as a “socially acceptable” way.
The Double Empathy Problem
Dr. Damian Milton suggests that autistic and non-autistic people are equally confused by each other. Do you find that to be correct?
It has been described as speaking two different dialects of the same language, where both sides say words, but neither side understands each other very well. (Verywell Mind, 2025).
What this can mean in terms of grief is that while an autistic person’s reaction to something tragic might seem odd, underwhelming, or nonexistent to a neurotypical person, it’s perfectly normal in their own processing style.
If you want to support an autistic person through their grieving process, consider these suggestions:
1. Be Direct. Skip the poetic metaphors. “They crossed the rainbow bridge,” or “He graduated to the next life,” or even “They passed away” can be confusing to some, or may be viewed as a pointless avoidance of reality to others.
Many will appreciate that “they died,” which is clear and to the point. This doesn’t mean we should be heartless when breaking the news; we should be kind and empathic, but we should get to the point.
2. Let them cope in their own way. Some will retreat and want to be alone, while others will want to play video games or binge-watch old cartoons. Whatever helps, helps.
3. Include them in rituals if they want. If they want to come to the funeral, great. If they’d rather stay home and listen to music, that’s okay too. Do not shame them for taking care of their emotional needs, and do not force them, but be clear about the possible results of both attending and not attending the rituals so that they can make an informed decision.
They may wish they had gone later or may become traumatized by the experience. If they are told what to expect, they can be in a better position to make the right decision.
4. Validate all forms of grief. Whether it’s for a person, a pet, or a discontinued soda, loss is loss and grief is appropriate in its various forms. Sometimes it is not the event that matters, but the emotions and feelings that are most important.
5. Offer professional support. A therapist who understands autism can be a major help. It is important that the individual who is grieving not be “trained” to show grief in a way that appeases others, but instead, they are able to honor their autism and react in ways consistent with who they truly are.
6. Humor is the best medicine. Humor is a great companion to grief. For some autistic people, humor is an effective coping tool. One adult, for instance, dealt with loss by watching their favorite comedy show on repeat. Predictability and laughter are a great combo and should not be taken for granted.
Like most things in life, grief doesn’t have to follow a script, and for autistic teens and adults, it might look a little different than what the world expects.
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Recognizing these differences and supporting each of our unique grieving styles can lead to a more compassionate, understanding world.
And if we can find a way to laugh along the way? Even better.
2. Davidson, D., Russo-Ponsaran, N., van Rest, M. M., & Scarpa, A. (2023). Editorial: Emotion processing in autism spectrum disorders. Frontiers in Psychology, 14 https://bit.ly/frontiersemotionprocessing
3. Doka, K. J. (2023). Grieving beyond gender: Understanding the ways men and women mourn. Routledge
4. Lipsky, Deborah. (2013). Helping People With Autism Grieve, and How To Help. Jessica Kingsley Publishers
5. Mair, A.P.A., Nimbley, E., McConachie, D. et al. Understanding the Neurodiversity of Grief: A Systematic Literature Review of Experiences of Grief and Loss in the Context of Neurodevelopmental Disorders. Rev J Autism Dev Disord (2024). https://bit.ly/neurodiversityofgrief
7. Srinivasan, S. (2024). The overlooked aspect of grief in autistic individuals. Developmental Psychology Today https://bit.ly/spectrumofloss
8. Verywell Mind. (2025). The double empathy problem and autism. https://bit.ly/doubleempathy
To read other columns by Dr. Service, visit: www.SpectrumLife.org/neurodivergentdoctor
Check out his YouTube channel at www.youtube.com/@NeurodivergentDoctor
Dr. Anson Service is a licensed mental health counselor, and part of a team that assesses individuals for autism, ADHD, and more at Adventure Psychological Services. Dr. Service has written for various magazines and authored several books and is happy to further educate others on autism and other areas of neurodiversity. He and his wife have raised three young men and are now raising their dog, Luna. www.NeurodivergentDoctor.com
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Activities
Autism Empowerment Upcoming Activities
City of Vancouver Autism Proclamation
Monday, April 14th, 2025
6:30 pm - 7:00 pm (arrive at 6:15 pm)
Vancouver City Hall 415 W. 6th St., Vancouver, WA 98660
Join Autism Empowerment and friends at Vancouver City Hall as the Mayor proclaims April to be Autism Acceptance Month.
Autism Society of Oregon Walk
Sunday, April 27th, 2025
9:00 am - Noon
Oaks Park
7805 SE Oaks Park Way, Portland, OR 97202
Autism Empowerment and Spectrum Life Magazine will be exhibiting. Come by and say hello!
Columbia Play Project Annual Family Play Day
Saturday, June 21st, 2025
10:00 am - 3:00 pm
Vancouver Waterfront Park 695 Waterfront Way, Vancouver, WA 98660
Come and play and get resources for your family.
Autism Empowerment Potluck Picnic and Celebration of Neurodiversity
Saturday, August 9th, 2025
11:00 am - 2:30 pm
Salmon Creek Park/Klineline Pond 1112 NE 117th St., Vancouver, WA 98685
More information coming in the Summer 2025 issue of Spectrum Life Magazine
